Lupus Nephritis | Kidney Disease Support

Question:

Anyone experience really harsh pain behind the breast bone, when eating of all things, extreme cold LIKE ice cream. Also sometimes when eating cold things, my heart beats are either skipped or irregular in some way. Anyone? Going to doc but I just wondered. YOu all know my achalasia problem and GERD but food seems to go down ok yet. This is out and out pain there behind that bone and takes awhile to settle down when eating icecream. sometimes I have to drink lots of water just to get it to stop. Wende around with the tummy? sorry help thanks guys janers who is fighting flares on and off again. Damn medrol tapper down

Response:

spasms? http://www.nlm.nih.gov/medlineplus/ency/article/000289.htm my esophagus just plain locks up when I try to do "cold" (or too hot) of anything. I don’t eat ice cream anymore but ever tried it room temp? swirl it around with a spoon or fork many times,it beomes creamy and the exposure to the air warms it a bit if you’re talking about on a cone, wait a bit till the outside warms up, then lick the outside layer off, then wait a bit, continue like that. Hugs Janers J – Hide quoted text — Show quoted text -janers wrote: > Anyone experience really harsh pain behind the breast bone, when eating of > all things, extreme cold LIKE ice cream. Also sometimes when eating cold > things, my heart beats are either skipped or irregular in some way. > Anyone? > Going to doc but I just wondered. YOu all know my achalasia problem and > GERD but food seems to go down ok yet. This is out and out pain there > behind that bone and takes awhile to settle down when eating icecream. > sometimes I have to drink lots of water just to get it to stop. > Wende around with the tummy? sorry > help thanks guys > janers > who is fighting flares on and off again. Damn medrol tapper down

Response:

On Wed, 3 Mar 2004 16:38:51 -0500, "janers" <rojak…@bright.net> wrote: >Anyone experience really harsh pain behind the breast bone, when eating of >all things, extreme cold LIKE ice cream. Also sometimes when eating cold >things, my heart beats are either skipped or irregular in some way. >Anyone?

often. it doesn’t have to be cold though – just something that irritates the area. It’s my take that this is often spasming of the esophagus. My esophagus will completely shut off – nothing goes down, not even water. It’s extremely painful and probably has a lot to do with not having enough moisture in the mouth and esophagus (medications, sjogren’s.) Stress is enough to cause this as well. A sip of carbonated drink. A bit of fried food. the list goes on. Sometimes the only way to deal with it, to be quite disgusting, is to allow anything in the esophagus to come back up (and sometimes it does this on it’s own.) once that happens the area seems to relax significantly and I can eat or drink again if I’m very careful.

Response:

At one point in my life I was tossing my cookies so much (due to tumors on my ovaries), that I started to look at food in terms of how much I would be able to stand it if it had to "come back up." Cool whip is a good choice, and it is not cold like ice cream. Also, have you ever heated ice cream (frozen yogurt is what I eat, actually) in the microwave, just briefly on low power? I was amazed to find it was "ice cream" but it was just not as cold. I don’t get esopageal problems, I get that nasal pain, which for me can lead to migraines. enough from me, Mair "Don’t wait for a ‘good time’ to do something, you might be dead before that happens." –anonymous lupus sufferer "kcat" <kcattxf…@sbcglobal.net> wrote in message

news:n1te40psljb7rj3ppoongacn0t009s2c3h@4ax.com… – Hide quoted text — Show quoted text -> On Wed, 3 Mar 2004 16:38:51 -0500, "janers" <rojak…@bright.net> > wrote: > >Anyone experience really harsh pain behind the breast bone, when eating of > >all things, extreme cold LIKE ice cream. Also sometimes when eating cold > >things, my heart beats are either skipped or irregular in some way. > >Anyone? > often. it doesn’t have to be cold though – just something that > irritates the area. It’s my take that this is often spasming of the > esophagus. My esophagus will completely shut off – nothing goes down, > not even water. It’s extremely painful and probably has a lot to do > with not having enough moisture in the mouth and esophagus > (medications, sjogren’s.) > Stress is enough to cause this as well. A sip of carbonated drink. A > bit of fried food. the list goes on. Sometimes the only way to deal > with it, to be quite disgusting, is to allow anything in the esophagus > to come back up (and sometimes it does this on it’s own.) > once that happens the area seems to relax significantly and I can eat > or drink again if I’m very careful.

Response:

Thank you for your remarks. As far as waiting for the ice cream to "warm up" tee hee, I tried that a couple times and it made no difference. The funny thing? Remember I have or had achalasia well you would think the stupid Solid foods would hurt like it did then NO. I did get to the GI doc this am, and to my bigger surprise the DUH CNP saw me. A very nice woman but she had no clue to what all problems I have or had been having in the past. SO of course, she was late getting in, I was trying to fill her in. and she ends up saying, "well lots of stuff can bring that on." She wrinkled her brow when I said heart palps but again messed with the stress level. I told he I have not had stress lately just lupus flares on and off since the trip and this stuff with the chest pain has been on and off for a couple weeks. OH stress can do that again plus traveling can cause your IBS to rattle. gee ya think, I am thinking LOL. but I Have the consipation side and I need a script for zelnorm, like the GI doc gives me. She wrote it out and said you know that is the hardest to treat, constipation with diarrhea. Try beneficial. or citracel. Gee I am on it. I mentioned the cleveland clinic and the treatment from them but she seemed concerned but yet blah. I hate having to see someone who does NOT know my history and fight for every thing again. sorry vent time. she gave me NULEV for spasms of the gut not the esopahgus., use under the tongue. For the esopagus? what ever…but that was it. Oh and her son has lupus nephritis. she told me that most all rheumy’s only say to use sunblock of or in the 30’s is enough. DUH Mine says Total block of 60…and I she said you know with lupus that all light makes and she couldn’t think of the word and stammered. ANITBODIES I say>…..oh yes.. I don’t know but she made me feel stupid and stupid is what stupid does LOL catch ya later. fighting sleep rightnow janers thanks guys

Response:

In article <n1te40psljb7rj3ppoongacn0t009s2…@4ax.com>, kcat <kcattxf…@sbcglobal.net> wrote [ >often.

She's not alone - my wife has the identical problems (and 'cures'). -- Andy [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!

Response:

janers i am sending you a big stick to beat off anyone who even thinks about treating you like stupid!!!!!!!!!!!!!!!!! I hear you loud and clear and think it’s not right! HUGS Leslie "Janers" <rojak…@bright.net> wrote in message

news:X-mdnZhfr56LA9rdRVn-hA@bright.net… – Hide quoted text — Show quoted text -> Thank you for your remarks. As far as waiting for the ice cream to "warm > up" tee hee, I tried that a couple times and it made no difference. The > funny thing? Remember I have or had achalasia well you would think the > stupid Solid foods would hurt like it did then NO. > I did get to the GI doc this am, and to my bigger surprise the DUH CNP saw > me. A very nice woman but she had no clue to what all problems I have or > had been having in the past. SO of course, she was late getting in, I was > trying to fill her in. and she ends up saying, "well lots of stuff can > bring that on." She wrinkled her brow when I said heart palps but again > messed with the stress level. I told he I have not had stress lately just > lupus flares on and off since the trip and this stuff with the chest pain > has been on and off for a couple weeks. OH stress can do that again plus > traveling can cause your IBS to rattle. > gee ya think, I am thinking LOL. but I Have the consipation side and I > need a script for zelnorm, like the GI doc gives me. She wrote it out and > said you know that is the hardest to treat, constipation with diarrhea. > Try beneficial. or citracel. Gee I am on it. I mentioned the cleveland > clinic and the treatment from them but she seemed concerned but yet blah. > I hate having to see someone who does NOT know my history and fight for > every thing again. sorry vent time. > she gave me NULEV for spasms of the gut not the esopahgus., use under the > tongue. For the esopagus? what ever…but that was it. > Oh and her son has lupus nephritis. she told me that most all rheumy’s only > say to use sunblock of or in the 30’s is enough. DUH Mine says Total block > of 60…and I she said you know with lupus that all light makes and she > couldn’t think of the word and stammered. > ANITBODIES I say>…..oh yes.. I don’t know but she made me feel stupid > and stupid is what stupid does LOL > catch ya later. fighting sleep rightnow > janers > thanks guys

Response:

On Thu, 4 Mar 2004 16:23:26 -0500, "Janers" <rojak…@bright.net> wrote: >say to use sunblock of or in the 30’s is enough. DUH Mine says Total block >of 60…and I she said you know with lupus that all light makes and she >couldn’t think of the word and stammered. >ANITBODIES I say>…..oh yes..

in fact – our larger issue is UVA (though yes, visible light, UV light and even infra-red can cause problems.) I used a post from one of J’s archves on the new FAQ (no it’s not quite ready for prime time) and did some more reading about it. Total Block has a new product "Cotz" that I think is much worth looking into for those of us that are very photosensitive and also have sensitive skin. I’ve put up with a 30SPF moisturizing sunblock from Skinceuticals. It’s good but it sometimes makes my eyes water for whatever reason. Cotz is supposed to be less reactive than Total Block and is 58SPF (I think we can lose 2 SPF at this point and still be very safe.) I’m going to try it anyway… k oh – it’s at dermadoctor.com for $26 a tube – which is slightly cheaper than the stuff I use. I’ve never used total block but with summer coming on…

Response:

Ditto, what "Kc" said. Wende "kcat" <kcattxf…@sbcglobal.net> wrote in message

Response:

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they don't want my book!

Question:

I think HiH is doing not too bad; considering I haven’t done any promotion…. I’m awaiting the publisher’s statement for last year… Grace. – Hide quoted text — Show quoted text -Candi Bowen wrote: > Sorry, Grace, that’s pretty stupid of them. How’s A Hole in the Hedge doing? > Candi > ———- > In article <4033EFD0.6C77F…@casselman.net>, Grace Casselman > <gr…@casselman.net> wrote: > >I just got word that the Lupus Society of Alberta won’t list my book in > >their bookstore OR run an announcement note in their newsletter! (and > >I’m a member; and am local!) > >Ah well. At least Ontario ran an announcement… > >I wonder if they’re objecting to the faith aspect of it? Hmmm…. ah > >well! > >Grace. > >www.casselman.net

Response:

>Subject: Re: they don’t want my book! >From: "Candi Bowen" reen…@neo.rr.com >Date: 2/20/2004 8:58 AM Mountain Standard Time >Message-id: <v8qZb.1111$6t5….@fe3.columbus.rr.com> >Sorry, Grace, that’s pretty stupid of them. How’s A Hole in the Hedge doing?

Ahem .. This title might well describe some of the members of this group .. Might be wise to shorten to .. hole in the hedge .. Who loves ya. Tom Jesus Was A Vegetarian! http://jesuswasavegetarian.7h.com Man Is A Herbivore! http://pages.ivillage.com/ironjustice/manisaherbivore DEAD PEOPLE WALKING http://pages.ivillage.com/ironjustice/deadpeoplewalking

Response:

I just got word that the Lupus Society of Alberta won’t list my book in their bookstore OR run an announcement note in their newsletter! (and I’m a member; and am local!) Ah well. At least Ontario ran an announcement… I wonder if they’re objecting to the faith aspect of it? Hmmm…. ah well! Grace. www.casselman.net

Response:

Well, honey, if that’s true, then wait til Mel Gibson’s done with ‘em & they’ll be ringing your phone off the wall! : ) Hugs, Maggie

Response:

Grace Casselman wrote: > I just got word that the Lupus Society of Alberta won’t list my book in > their bookstore OR run an announcement note in their newsletter! (and > I’m a member; and am local!) > Ah well. At least Ontario ran an announcement… > I wonder if they’re objecting to the faith aspect of it? Hmmm…. ah > well!

So sorry Grace, did they have a copy of it to read? Glad Ontario announced it. Did ya happen to notice who’ll be there on Feb 21st? The Lupus Society of Alberta is proud to present Education Symposium 2004, featuring key note speaker DANIEL J. WALLACE, M.D., Saturday, February 21st, 2004 at the Sheraton Cavalier Hotel Calgary, Alberta. Don

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Treatment hypothesis for SARS

Question:

Dear Bob, Very interesting ideas, and good references, which I will attempt to reread and consider in greater depth as time permits. In the meantime, wouldn’t it also be prudent to develop a "preventive" vaccine for SARS, and also SARS-specific immune globulin containing high titers of antibodies to the SARS coronavirus, for emergency treatment? Since most people do recover from SARS, their immune system is clearly able to fight the virus, and an effective vaccine for SARS would be a piece of cake compared to a vaccine for HIV or some other chronic viral infections! Even if SARS mutates fairly quickly, there’d be enough cross-reactivity to help the vaccineted person not get quite so ill as an unvaccinated person. Since our labs can update the flu vaccine every year, there’s no excuse for failing to develop a SARS vaccine right away! A decent vaccine could stop the spread of SARS in its tracks, and save many lives. Gary http://gjminter.addr.com – Hide quoted text — Show quoted text – SARS: An hypothesis for treatment Fc Receptors Leukocyte Fc receptors (FcR) are cell surface glycoproteins that bind the Fc portion of immunoglobulin (Ig), thereby linking antigen recognition by antibodies with cell-based effector mechanisms. Fc receptors for IgG expressed on macrophages and NK cells are important mediators of opsonophagocytosis and Ab-dependent cell-mediated cytotoxicity. Fc receptor-mediated phagocytosis plays a pivotal role in clearance of respiratory virus infections [1]. Influenza A virus infection, for example, induces cross-reactive antibodies that enhance uptake of virus into Fc receptor-bearing cells [2]. Some complex viruses (e.g. Poxviruses, Herpesviruses) may have more than one receptor/receptor-binding protein, therefore, there may be alternative routes of uptake into cells. Specific receptor binding can be side-stepped by antibody-coated virus particles binding to Fc receptor on the surface of monocytes, which results in virus uptake [3]. The expression (or absence) of receptors on the surface of cells largely determines the TROPISM of most viruses, i.e. the type of cell in which they are able to replicate – important factor in pathogenesis. Attachment is in most cases a reversible process – if penetration does not ensue, the virus can elute from the cell surface. Some viruses have specific mechanisms for "detachment" e.g. Influenza neuraminidase protein. BUT: elution from cell often leads to changes in the virus that decrease or eliminate the possibility of attaching to other cells. SARS coronavirus The SARS coronavirus is a single-stranded positive (+) sense RNA virus. Polycistronic mRNA, e.g. Picornaviruses and the Flavivirus "Yellow fever virus" (hemorrhagic fever) are also Ssrna+ viruses. The genome RNA of the virus is the mRNA. Translation of the mRNA into DNA results in the formation of a polyprotein product, which is subsequently cleaved to form the mature proteins. [3]. Antibodies and viral infections and Fc Receptors Specific antibodies are important in and may protect against viral infections. The most effective type of antiviral antibody is "neutralizing" antibody – this is antibody which binds to the virus, usually to the viral envelope or capsid proteins, and which blocks the virus from binding and gaining entry to the host cell. Virus specific antibodies may also act as opsonins in enhancing phagocytosis of virus particles – this effect may be further enhanced by complement activation by antibody-coated virus particles. In addition, in the case of some viral infections, viral proteins are expressed on the surface of the infected cell. These may act as targets for virus-specific antibodies, and may lead to complement-mediated lysis of the infected cell, or may direct a subset of natural killer cells to lyse the infected cell through a process known as antibody-directed cellular cytotoxicity (ADCC). At mucosal surfaces (such as the respiratory and gastrointestinal tracts), virus infection may induce the production of specific antibodies of the IgA isotype, which may be protective against infection at these surfaces. (This is the basis of immunisation with the current oral polio vaccine) [4]. Not all antibodies to viruses are protective, however, and in certain cases antibody to the virus may facilitate its entry into a cell through Fc receptor-mediated uptake of the antibody coated particle. Such antibodies are called enhancing antibodies. Non-neutralizing antibody has been shown to enhance the virulence of the alpha and flaviviruses by promoting their binding to FC receptors [5]. In murine hepatitis virus, MHV S peplomer protein exhibits Fc IgG binding ability. The SARS coronavirus appears very similar to the murine hepatitis virus though they are not the same [6]. Antigenic variation among murine coronaviruses is associated primarily with the surface peplomer protein E2 (180,000 Da). E2 is responsible for attachment of the virus to the host cell, MHV-induced cell fusion, and eliciting neutralizing antibody. Molecular mimicry exists between E2 and Fc gamma receptor (Fc gamma R) [7]. MHV S peplomer protein expressed by a recombinant vaccinia virus vector exhibits IgG Fc-receptor activity [8]. Polymorphisms of Fc receptors for IgG (Fc gamma R) have been proposed as a genetic factor that influences susceptibility for the human disease, systemic lupus erythematosus (SLE) [9]. Allelic variants of Fc gamma R confer distinct phagocytic capacities providing a mechanism for heritable susceptibility to immune complex disease. Human Fc gamma RIIa has two codominantly expressed alleles, R131 and H131, which differ substantially in their ability to ligate human IgG2. The Fc gamma RIIa-H131 is the only human Fc gamma R which recognizes IgG2 efficiently and optimal IgG2 handling occurs only in the homozygous state [10]. Trend analysis of the genotype distribution showed a highly significant decrease in Fc gamma RIIA-H131 as the likelihood for lupus nephritis increased (P = 0.0004) consistent with a protective effect of the Fc gamma RIIA-H131 gene. The skewing in the distribution of Fc gamma RIIA alleles identifies this gene as a risk factor with pathophysiologic importance for the SLE diathesis in African Americans [11]. An abnormal distribution of Fc gammaRIIa polymorphisms was associated with SLE in Korean patients [12]. One hundred eight Caucasian patients were diagnosed with SLE according to the American College of Rheumatology criteria. The SLE patients and 187 Caucasian controls were genotyped for the FcgammaRIIa polymorphism, and associations between FcgammaRIIa genotypes, selected HLA haplotypes, and clinical as well as laboratory features were analyzed. Results indicated no significant skewing of the FcgammaRIIa polymorphism was observed in the SLE Caucasian cohort. The FcgammaRIIa polymorphism constitutes an additional factor that might influence the clinical manifestations and course of SLE, but does not represent a genetic risk factor for the occurrence of SLE [13]. We see, in the above information, that there appears to be some differences in ethnic groups relative to Fc receptors for IgG. In Systemic Lupus Erythematosus we see skewed Fc receptors for IgG in Africans and Asians but not in Caucasians. You will recall that Fc receptors are cell surface glycoproteins that bind the Fc portion of immunoglobulin (Ig), thereby linking antigen recognition by antibodies with cell-based effector mechanisms. Yap (1999) found in their studies, "based on 175 Chinese and 50 Malays SLE patients as well as 108 and 50 ethnically (Chinese and Malays), matched healthy controls for the respective groups in examining Fc Gamma Receptors relative to Lupus (SLE). Analysis of the data (chi2 test with Yates correction factors and odds ratios) revealed that there were no significant differences between SLE patients and controls. We have not found evidence of a protective effect conferred by FcgammaRIIA-H131 in the ethnic groups studied" [14]. Fcgamma receptors (FcgammaRs) are potent initiators of proinflammatory reactions and tissue injury programs through the oxidative burst, degranulation and the production of a variety of proinflammatory cytokines. The well-characterized and functionally important alleles of neutrophil FcgammaR (FcgammaRIIa-H131/R131 and FcgammaRIIIb-NA1/NA2) are possible inheritable genetic elements that may alter disease severity and/or phenotype [15]. Work like this has also been directed toward determining differences between and among, for example, Ethiopians and Norwegians with the observation that "The variation of different polymorphisms both within and between ethnic groups may influence differences in the incidence rates of infectious and autoimmune diseases" [16]. So then, if there are ethnic differences relative to the Fc gamma Receptors associated with IgG and incidence of infectious and autoimmune diseases, might this serve as a basis whereby it might be possible to understand SARS? Let’s consider the situation in SARS coronavirus and the currently developing pandemic. At this point, there have been over a thousand Chinese infected with SARS and the mortality rate hovers around 5% of that population. In contrast, Caucasian-predominate nations have very few cases of SARS and, for example, in the United States no one has died from SARS. While the disease is not widely spread in Caucasian countries at this time (those infected in Toronto are predominately Chinese), there may be some reason to consider ethnicity and differential immune-system

Response:

SARS: An hypothesis for treatment Fc Receptors Leukocyte Fc receptors (FcR) are cell surface glycoproteins that bind the Fc portion of immunoglobulin (Ig), thereby linking antigen recognition by antibodies with cell-based effector mechanisms. Fc receptors for IgG expressed on macrophages and NK cells are important mediators of opsonophagocytosis and Ab-dependent cell-mediated cytotoxicity. Fc receptor-mediated phagocytosis plays a pivotal role in clearance of respiratory virus infections [1]. Influenza A virus infection, for example, induces cross-reactive antibodies that enhance uptake of virus into Fc receptor-bearing cells [2]. Some complex viruses (e.g. Poxviruses, Herpesviruses) may have more than one receptor/receptor-binding protein, therefore, there may be alternative routes of uptake into cells. Specific receptor binding can be side-stepped by antibody-coated virus particles binding to Fc receptor on the surface of monocytes, which results in virus uptake [3]. The expression (or absence) of receptors on the surface of cells largely determines the TROPISM of most viruses, i.e. the type of cell in which they are able to replicate – important factor in pathogenesis. Attachment is in most cases a reversible process – if penetration does not ensue, the virus can elute from the cell surface. Some viruses have specific mechanisms for "detachment" e.g. Influenza neuraminidase protein. BUT: elution from cell often leads to changes in the virus that decrease or eliminate the possibility of attaching to other cells. SARS coronavirus The SARS coronavirus is a single-stranded positive (+) sense RNA virus. Polycistronic mRNA, e.g. Picornaviruses and the Flavivirus "Yellow fever virus" (hemorrhagic fever) are also Ssrna+ viruses. The genome RNA of the virus is the mRNA. Translation of the mRNA into DNA results in the formation of a polyprotein product, which is subsequently cleaved to form the mature proteins. [3]. Antibodies and viral infections and Fc Receptors Specific antibodies are important in and may protect against viral infections. The most effective type of antiviral antibody is "neutralizing" antibody – this is antibody which binds to the virus, usually to the viral envelope or capsid proteins, and which blocks the virus from binding and gaining entry to the host cell. Virus specific antibodies may also act as opsonins in enhancing phagocytosis of virus particles – this effect may be further enhanced by complement activation by antibody-coated virus particles. In addition, in the case of some viral infections, viral proteins are expressed on the surface of the infected cell. These may act as targets for virus-specific antibodies, and may lead to complement-mediated lysis of the infected cell, or may direct a subset of natural killer cells to lyse the infected cell through a process known as antibody-directed cellular cytotoxicity (ADCC). At mucosal surfaces (such as the respiratory and gastrointestinal tracts), virus infection may induce the production of specific antibodies of the IgA isotype, which may be protective against infection at these surfaces. (This is the basis of immunisation with the current oral polio vaccine) [4]. Not all antibodies to viruses are protective, however, and in certain cases antibody to the virus may facilitate its entry into a cell through Fc receptor-mediated uptake of the antibody coated particle. Such antibodies are called enhancing antibodies. Non-neutralizing antibody has been shown to enhance the virulence of the alpha and flaviviruses by promoting their binding to FC receptors [5]. In murine hepatitis virus, MHV S peplomer protein exhibits Fc IgG binding ability. The SARS coronavirus appears very similar to the murine hepatitis virus though they are not the same [6]. Antigenic variation among murine coronaviruses is associated primarily with the surface peplomer protein E2 (180,000 Da). E2 is responsible for attachment of the virus to the host cell, MHV-induced cell fusion, and eliciting neutralizing antibody. Molecular mimicry exists between E2 and Fc gamma receptor (Fc gamma R) [7]. MHV S peplomer protein expressed by a recombinant vaccinia virus vector exhibits IgG Fc-receptor activity [8]. Polymorphisms of Fc receptors for IgG (Fc gamma R) have been proposed as a genetic factor that influences susceptibility for the human disease, systemic lupus erythematosus (SLE) [9]. Allelic variants of Fc gamma R confer distinct phagocytic capacities providing a mechanism for heritable susceptibility to immune complex disease. Human Fc gamma RIIa has two codominantly expressed alleles, R131 and H131, which differ substantially in their ability to ligate human IgG2. The Fc gamma RIIa-H131 is the only human Fc gamma R which recognizes IgG2 efficiently and optimal IgG2 handling occurs only in the homozygous state [10]. Trend analysis of the genotype distribution showed a highly significant decrease in Fc gamma RIIA-H131 as the likelihood for lupus nephritis increased (P = 0.0004) consistent with a protective effect of the Fc gamma RIIA-H131 gene. The skewing in the distribution of Fc gamma RIIA alleles identifies this gene as a risk factor with pathophysiologic importance for the SLE diathesis in African Americans [11]. An abnormal distribution of Fc gammaRIIa polymorphisms was associated with SLE in Korean patients [12]. One hundred eight Caucasian patients were diagnosed with SLE according to the American College of Rheumatology criteria. The SLE patients and 187 Caucasian controls were genotyped for the FcgammaRIIa polymorphism, and associations between FcgammaRIIa genotypes, selected HLA haplotypes, and clinical as well as laboratory features were analyzed. Results indicated no significant skewing of the FcgammaRIIa polymorphism was observed in the SLE Caucasian cohort. The FcgammaRIIa polymorphism constitutes an additional factor that might influence the clinical manifestations and course of SLE, but does not represent a genetic risk factor for the occurrence of SLE [13]. We see, in the above information, that there appears to be some differences in ethnic groups relative to Fc receptors for IgG. In Systemic Lupus Erythematosus we see skewed Fc receptors for IgG in Africans and Asians but not in Caucasians. You will recall that Fc receptors are cell surface glycoproteins that bind the Fc portion of immunoglobulin (Ig), thereby linking antigen recognition by antibodies with cell-based effector mechanisms. Yap (1999) found in their studies, "based on 175 Chinese and 50 Malays SLE patients as well as 108 and 50 ethnically (Chinese and Malays), matched healthy controls for the respective groups in examining Fc Gamma Receptors relative to Lupus (SLE). Analysis of the data (chi2 test with Yates correction factors and odds ratios) revealed that there were no significant differences between SLE patients and controls. We have not found evidence of a protective effect conferred by FcgammaRIIA-H131 in the ethnic groups studied" [14]. Fcgamma receptors (FcgammaRs) are potent initiators of proinflammatory reactions and tissue injury programs through the oxidative burst, degranulation and the production of a variety of proinflammatory cytokines. The well-characterized and functionally important alleles of neutrophil FcgammaR (FcgammaRIIa-H131/R131 and FcgammaRIIIb-NA1/NA2) are possible inheritable genetic elements that may alter disease severity and/or phenotype [15]. Work like this has also been directed toward determining differences between and among, for example, Ethiopians and Norwegians with the observation that "The variation of different polymorphisms both within and between ethnic groups may influence differences in the incidence rates of infectious and autoimmune diseases" [16]. So then, if there are ethnic differences relative to the Fc gamma Receptors associated with IgG and incidence of infectious and autoimmune diseases, might this serve as a basis whereby it might be possible to understand SARS? Let’s consider the situation in SARS coronavirus and the currently developing pandemic. At this point, there have been over a thousand Chinese infected with SARS and the mortality rate hovers around 5% of that population. In contrast, Caucasian-predominate nations have very few cases of SARS and, for example, in the United States no one has died from SARS. While the disease is not widely spread in Caucasian countries at this time (those infected in Toronto are predominately Chinese), there may be some reason to consider ethnicity and differential immune-system functioning in response to disease. Might this difference in ethnicity-number-dead-and-infected be a function of an "influencing of differences in the incidence rates of infectious and autoimmune diseases" suggested above? This might depend on whether SARS coronavirus activates Fc gamma Receptors in Asian and Africans who may have a disproportionate proinflammatory reaction to SARS. This remains to be seen as the science progresses. However, we might expect that this potent proinflammatory reaction might be due to the SARS coronavirus and perhaps this potent proinflammatory rection is associated with Fc gamma Receptors. It is a theory worth investigating. Untried Treatments for SARS? As indicated above, the coronaviruses related to SARS coronavirus display an "S peplomer protein" that mimicks Fc receptors and the E2 glycoprotein of Murine hepatitis virus, for example, displays Fc receptor-like activity. Perhaps if there was a way to prevent the "potent proinflammatory response" induced by SARS, a therapeutic treatment may be offered to those in whom the Fc gamma Receptor triggers a profound proinflammatory response. Work suggests that nitric oxide may function in an anti-inflammatory capacity by down-regulating endotoxin-stimulated cytokine production by alveolar macrophages and matured monocytes [17]. Use of a treatment that would prevent the cascade … read more »

Response:

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Got copy of results

Question:

Amen! That was exactly my thought. Geesh I haven’t been pain freen in about 30+ years I would know that I had died and went to Heaven. Hugs, Sherry "BJ" <B…@sk.nojunk.ca> wrote in message

news:v46bgogp1n8135@corp.supernews.com… – Hide quoted text — Show quoted text -> No, not likely. I would think I had died and gone to heaven. > BJ-Sk. Canada > "Sherry" <hurst…@NoSpam.invalid> wrote in message > news:jvF0a.1409$LE.478566526@newssvr13.news.prodigy.com… > > BJ, if we woke up one morning pain free and feeling great…do you think > > that we could get over the shock of it? > > Hugs, > > Sherry > > "BJ" <B…@sk.nojunk.ca> wrote in message > > news:v45mg04h67478c@corp.supernews.com… > > > Hi Sylvie, > > > It is hard to stay positive sometimes, isn’t it? It would be so nice to > > just > > > wake up one morning without pain, or without having to wonder what will > > come > > > next. I hope things improve for you soon. > > > BJ-Sk. Canada > > > "Sylvie De Roy" <alleg…@NOSPAMgeneration.net> wrote in message > > > news:PM0003B6077886AD9D@unknown.generation.net… > > > > BJ wrote: > > > > > Hi Sylvie, > > > > > I can’t add much to what J said. How are you feeling now? > > > > Hi BJ, > > > > Hope you’re feeling better soon. You ask how I feel, well today I > feel > > > > energyless, like a chiffon barbie and my lower back is aching. I try > to > > > > remain positive through it all. Take care. > > > > Sylvie in Montreal

Response:

One day – just *one* – without pain? I think I could manage to cope. "Sherry" <hurst…@NoSpam.invalid> wrote in message

news:jvF0a.1409$LE.478566526@newssvr13.news.prodigy.com… – Hide quoted text — Show quoted text -> BJ, if we woke up one morning pain free and feeling great…do you think > that we could get over the shock of it? > Hugs, > Sherry > "BJ" <B…@sk.nojunk.ca> wrote in message > news:v45mg04h67478c@corp.supernews.com… > > Hi Sylvie, > > It is hard to stay positive sometimes, isn’t it? It would be so nice to > just > > wake up one morning without pain, or without having to wonder what will > come > > next. I hope things improve for you soon. > > BJ-Sk. Canada > > "Sylvie De Roy" <alleg…@NOSPAMgeneration.net> wrote in message > > news:PM0003B6077886AD9D@unknown.generation.net… > > > BJ wrote: > > > > Hi Sylvie, > > > > I can’t add much to what J said. How are you feeling now? > > > Hi BJ, > > > Hope you’re feeling better soon. You ask how I feel, well today I feel > > > energyless, like a chiffon barbie and my lower back is aching. I try to > > > remain positive through it all. Take care. > > > Sylvie in Montreal

Response:

Amen! "J Rogow" <JRo…@SpammenotNewsguy.com> wrote in message

news:b1vj4302vj@enews1.newsguy.com… – Hide quoted text — Show quoted text -> One day – just *one* – without pain? > I think I could manage to cope. > "Sherry" <hurst…@NoSpam.invalid> wrote in message > news:jvF0a.1409$LE.478566526@newssvr13.news.prodigy.com… > > BJ, if we woke up one morning pain free and feeling great…do you think > > that we could get over the shock of it? > > Hugs, > > Sherry > > "BJ" <B…@sk.nojunk.ca> wrote in message > > news:v45mg04h67478c@corp.supernews.com… > > > Hi Sylvie, > > > It is hard to stay positive sometimes, isn’t it? It would be so nice to > > just > > > wake up one morning without pain, or without having to wonder what will > > come > > > next. I hope things improve for you soon. > > > BJ-Sk. Canada > > > "Sylvie De Roy" <alleg…@NOSPAMgeneration.net> wrote in message > > > news:PM0003B6077886AD9D@unknown.generation.net… > > > > BJ wrote: > > > > > Hi Sylvie, > > > > > I can’t add much to what J said. How are you feeling now? > > > > Hi BJ, > > > > Hope you’re feeling better soon. You ask how I feel, well today I > feel > > > > energyless, like a chiffon barbie and my lower back is aching. I try > to > > > > remain positive through it all. Take care. > > > > Sylvie in Montreal

Response:

Wishing you luck on the "periscope" procedure – isn’t the prep "fun"? "J" <StrangeB…@example.com> wrote in message

news:3E424A74.5AB9387D@execulink.com… – Hide quoted text — Show quoted text -> Sylvie De Roy wrote: > > Since I was not successful in pumping the ophthalmologist for > > information, I went to Medical Records and asked for a copy of my blood > > tests. Here it is, hope someone on this newsgroup can enlighten me. > > ANA Test : > > Diffuse 1/320 and Granular 1/320 > > Interpretation : autoimmune pathology suggested … anti-ENA and > > anti-nADN > > Angiotensine enzyme test : 20 > Hi Sylvie, > Good start. Something’s up with the 1:320 > Angiotensin enzyme, checks the vascular for heart or renal (kidney) I > think. > I don’t know what the 20 means. But it’s a "baseline" for now. > Looks like the "autoimmune pathology suggested" means you’ve got something > "autoimmune" happening and/or more autoimmune bloodwork is required. If > you end up feeling like a pin cushion during this process, it’s okay, most > of the Lupies do. > So far nothing that says to me Lupus for sure, but a good start. > Next the hematologist on Feb 25th, right? Hope he’s a nice guy to you. > The one I saw here was a jerk. Someday I’ll send him a letter telling him > so. But in case anything shows up on my test, I can’t "dis" anybody at > the Cancer Clinic. I’d be shooting myself in the foot, right? > I’m the Ontario person. It seems here too that the haematologists are all > at our Cancer clinics, and/or it’s where they do their major work and do > additional bloodwork there, because I guess all the equipment/lab is > there. Is there a rheumy appointment? You/haematologist may send the test > results to the rheumy and/or you can /should ask for a copy too. > How did the appointment with the gynaecologist go? > This is all I can say for now, perhaps others have comments. > I’m in the middle of prep for colonscopy, later today. > Hugs, keep in touch, thinking of you. > J

Response:

Sylvie, I am not real good at deciphering lab tests. I think that you might find this site useful in explaining the tests and the results. www.uklupus.co.uk Sorry that you felt like no one was going to respond. Sometimes I hold back waiting to see if one of the "knowledgeable" people are on and wait for them to give an intelligent answer. Sometimes we are just a bit slower than other times. Depends on what day of the week and everyones schedules. I know if you are like the rest of us when you have a question you want an answer now. Hugs, Sherry "Sylvie De Roy" <alleg…@NOSPAMgeneration.net> wrote in message news:PM0003B5F4C8599AF9@unknown.generation.net… – Hide quoted text — Show quoted text -> Greetings, > Since I was not successful in pumping the ophthalmologist for > information, I went to Medical Records and asked for a copy of my blood > tests. Here it is, hope someone on this newsgroup can enlighten me. > ANA Test : > Diffuse 1/320 and Granular 1/320 > Interpretation : autoimmune pathology suggested … anti-ENA and > anti-nADN > Angiotensine enzyme test : 20 > Thanks! > — > Sylvie in Montreal

Response:

BJ wrote: > Hi Sylvie, > I can’t add much to what J said. How are you feeling now?

Hi BJ, Hope you’re feeling better soon. You ask how I feel, well today I feel energyless, like a chiffon barbie and my lower back is aching. I try to remain positive through it all. Take care. Sylvie in Montreal

Response:

Sherry wrote: > Sylvie, > I am not real good at deciphering lab tests. I think that you might > find this site useful in explaining the tests and the results. > www.uklupus.co.uk

Thanks Sherry for the pointer. I appreciate it. Take care. Sylvie in Montreal

Response:

Hi Sylvie, It is hard to stay positive sometimes, isn’t it? It would be so nice to just wake up one morning without pain, or without having to wonder what will come next. I hope things improve for you soon. BJ-Sk. Canada "Sylvie De Roy" <alleg…@NOSPAMgeneration.net> wrote in message news:PM0003B6077886AD9D@unknown.generation.net… – Hide quoted text — Show quoted text -> BJ wrote: > > Hi Sylvie, > > I can’t add much to what J said. How are you feeling now? > Hi BJ, > Hope you’re feeling better soon. You ask how I feel, well today I feel > energyless, like a chiffon barbie and my lower back is aching. I try to > remain positive through it all. Take care. > Sylvie in Montreal

Response:

BJ wrote: > Hi Sylvie, > It is hard to stay positive sometimes, isn’t it? It would be so nice > to just wake up one morning without pain, or without having to wonder what > will come next. I hope things improve for you soon. > BJ-Sk. Canada

Well I’ve got this appointment on Feb 25th with the haematologist; hope he’ll be able to decipher my health issue though I have already found out a lot on my own. I keep my fingers crossed. And I will continue to further research alternative means to improve my condition. Take care. Oh by the way, thanks to Saskatchewan we had a few days of mild temperature. But now we’re back in the -20s, this time Alberta is the culprit. ;-) Sylvie in Montreal

Response:

"J" <StrangeB…@example.com> wrote in message

news:3E424A74.5AB9387D@execulink.com… > This is all I can say for now, perhaps others have comments. > I’m in the middle of prep for colonscopy, later today. > Hugs, keep in touch, thinking of you. > J

I hope the colonoscopy is over now and you got a good report. I’ve had two and to me, the prep is by far the worse part. Hope you start feeling better. Soft hug, Suzie

Response:

BJ, if we woke up one morning pain free and feeling great…do you think that we could get over the shock of it? Hugs, Sherry "BJ" <B…@sk.nojunk.ca> wrote in message

news:v45mg04h67478c@corp.supernews.com… – Hide quoted text — Show quoted text -> Hi Sylvie, > It is hard to stay positive sometimes, isn’t it? It would be so nice to just > wake up one morning without pain, or without having to wonder what will come > next. I hope things improve for you soon. > BJ-Sk. Canada > "Sylvie De Roy" <alleg…@NOSPAMgeneration.net> wrote in message > news:PM0003B6077886AD9D@unknown.generation.net… > > BJ wrote: > > > Hi Sylvie, > > > I can’t add much to what J said. How are you feeling now? > > Hi BJ, > > Hope you’re feeling better soon. You ask how I feel, well today I feel > > energyless, like a chiffon barbie and my lower back is aching. I try to > > remain positive through it all. Take care. > > Sylvie in Montreal

Response:

No, not likely. I would think I had died and gone to heaven. BJ-Sk. Canada "Sherry" <hurst…@NoSpam.invalid> wrote in message

Response:

Greetings, Since I was not successful in pumping the ophthalmologist for information, I went to Medical Records and asked for a copy of my blood tests. Here it is, hope someone on this newsgroup can enlighten me. ANA Test : Diffuse 1/320 and Granular 1/320 Interpretation : autoimmune pathology suggested … anti-ENA and anti-nADN Angiotensine enzyme test : 20 Thanks! — Sylvie in Montreal

Response:

Sylvie De Roy wrote: > Since I was not successful in pumping the ophthalmologist for > information, I went to Medical Records and asked for a copy of my blood > tests. Here it is, hope someone on this newsgroup can enlighten me. > ANA Test : > Diffuse 1/320 and Granular 1/320 > Interpretation : autoimmune pathology suggested … anti-ENA and > anti-nADN > Angiotensine enzyme test : 20

Hi Sylvie, Good start. Something’s up with the 1:320 Angiotensin enzyme, checks the vascular for heart or renal (kidney) I think. I don’t know what the 20 means. But it’s a "baseline" for now. Looks like the "autoimmune pathology suggested" means you’ve got something "autoimmune" happening and/or more autoimmune bloodwork is required. If you end up feeling like a pin cushion during this process, it’s okay, most of the Lupies do. So far nothing that says to me Lupus for sure, but a good start. Next the hematologist on Feb 25th, right? Hope he’s a nice guy to you. The one I saw here was a jerk. Someday I’ll send him a letter telling him so. But in case anything shows up on my test, I can’t "dis" anybody at the Cancer Clinic. I’d be shooting myself in the foot, right? I’m the Ontario person. It seems here too that the haematologists are all at our Cancer clinics, and/or it’s where they do their major work and do additional bloodwork there, because I guess all the equipment/lab is there. Is there a rheumy appointment? You/haematologist may send the test results to the rheumy and/or you can /should ask for a copy too. How did the appointment with the gynaecologist go? This is all I can say for now, perhaps others have comments. I’m in the middle of prep for colonscopy, later today. Hugs, keep in touch, thinking of you. J

Response:

Hi Sylvie, I can’t add much to what J said. I have a really nice blood man. He is a pretty cool dude. I had a couple of bone marrow tests done. They may not have to do one on you. I don’t know. How are you feeling now? BJ-Sk. Canada "Sylvie De Roy" <alleg…@NOSPAMgeneration.net> wrote in message news:PM0003B5F4C8599AF9@unknown.generation.net… – Hide quoted text — Show quoted text -> Greetings, > Since I was not successful in pumping the ophthalmologist for > information, I went to Medical Records and asked for a copy of my blood > tests. Here it is, hope someone on this newsgroup can enlighten me. > ANA Test : > Diffuse 1/320 and Granular 1/320 > Interpretation : autoimmune pathology suggested … anti-ENA and > anti-nADN > Angiotensine enzyme test : 20 > Thanks! > — > Sylvie in Montreal

Response:

J wrote: > Hi Sylvie,

Hi J in Ontario, Thank you so much for replying. I appreciate the fact that you took the time to answer my post. I thought I wouldn’t get any replies so I googled the lab’s findings and got a few quite interesting links. > Angiotensin enzyme, checks the vascular for heart or renal (kidney) I > think. I don’t know what the 20 means.

Correct. > Looks like the "autoimmune pathology suggested" means you’ve got > something "autoimmune" happening.

Actually, this anti-nDNA puzzled me but again Google came to the rescue and this is what I found: "Antibodies against native (double stranded) DNA (nDNA) are found almost exclusively in patients with SLE….The serum level of anti-nDNA antibodies in patients with SLE correlates significantly with the level of disease activity, particularly when there is renal involvement." This last sentence could probably explain my constant lower back pain. Well at least it is a pointer. "Anti-nDNA is an immunoglobulin specific against native (double-stranded) DNA. This test is highly specific for SLE…..60-80% of patients with active SLE have a positive anti-nDNA test…The presence of anti-nDNA is associated with a greater risk of lupus nephritis." > Next the hematologist on Feb 25th, right? Hope he’s a nice guy to > you.

Correct, at Hotel-Dieu Hospital the appointment is set for 8h. am. Nice guy? That remains to be seen. Guess what? There are 2 research centers on Lupus in Montreal, one is located at the Montreal General Hospital and the other at the Notre-Dame Hospital. I phoned the center at the Notre-Dame Hospital because it is very close to my appartment building and I was told that … and I quote: Due to current pressure tactics by doctors and specialists we are not accepting any patient… end of quote. How nice is a state-run health care system. So I decided to look elsewhere. Last week I went to an alternative medicine clinic and met with a pharmacist who agreed to go over the lab tests with me. Spoke with him yesterday over the phone and he will try to squeeze me in between 2 patients tomorrow Friday before leaving on a one-week vacation. He also spoke highly of Professor Michael Kiriac who runs a research clinic in Montreal and was involved in a successful controlled experiment with children and adults suffering from radiation related illnesses after the Chernobyl disaster. I stand to gain something there, the Sherlock Holmes in me just won’t stand idle. > The one I saw here was a jerk. Someday I’ll send him a letter telling > him > so. But in case anything shows up on my test, I can’t "dis" anybody > at > the Cancer Clinic. I’d be shooting myself in the foot, right?

I understand what you mean. I felt like giving the ophthalmologist who treated me like a nobody a taste of his own medicine. > Is there a rheumy appointment?

No, not yet. But a friend nurse of mine has given me the name of a supposedly "nice" , compassionate and understanding rheumatologist. > How did the appointment with the gynaecologist go?

OK, I guess. Have to wait for the PAP test results and in the meantime I have to go for an ultrasound scan of the pelvis. On March 4th, I have an appointment with the endocrinologist, at least that one is an ultra-nice guy, I have been seeing him for the last 15 years. There might be some connection with the thyroid disorder I am suffering from and my current health issue. I trust him to decipher the current state of affairs ;-) > I’m in the middle of prep for colonscopy, later today.

Best of luck, I had one. If you are nervous about the procedure, ask to be sedated. > Hugs, keep in touch, thinking of you. > J

Polar Bear hugs from me to you. Again thanks for your kind words. — Sylvie in Montreal

Response:

Posted in Lupus Nephritis | No Comments » |

Methotrexate vs Imuran

Question:

Hello Cindy, I’m so glad to see you post. It really must be hard on all of you, the kids are probably in a different kind of pain. I remember growing up, when Mom was so sick (not lupus), but it broke my heart, and I felt so helpless to help her out. Health challenges sure do build character though and they’ll be better husbands, wives and care-givers (humans) for the experiences that you are going through together. Perhaps they too will come to see what you see, the silver lining above the clouds (the good things that we often overlook when one of our loved ones is chronically ill). They’re allowed to post here too, if you/they want to. ( ( ( ( ( Cindy W ) ) ) ) – Hide quoted text — Show quoted text -Ward wrote: > Grace, I had to poat as we have had alot in common in treatments. I did cytoxin > for a year in pill form daily it was a bad idea did more damage than good. Then > last year I did Gamma all year weekly infusions that finally I was getting so sick > from I stopped them. I got the aseptic menengitis plus my central lines became > infected and I started running high fevers for weeks after each treatment. Took > them along time to listen to me and do a culture then a week in hospital recovering > from that. > Now they want me to do the MTX and cell cept has been suggested. How did that work > on you you said it did not make you feel good, what did it do? I have tried > everything else. I have Lupus with central nervous system involvement, polymyositis > and Diabetes. I am on pred and depakote for seizures and migraines > plus all my diabetes meds and premarin as well as pain meds and asacol for stomach > for colitis and proctitis. As for your remission post I am waiting for mine too it > will be 5 years in April. I have in all honestly just gotten worse physically but > better in my heart for all the wonderful people I have met and gotten to know ant > now I take time to notice the world around me so is a trade off I suppose. The real > hard part is how it effects the people we love my kids are 13 and 21 and I see the > pain in their eyes and the denial. That hurts more than any joint or any other kind > of pain I could ever have. Anyway I just had to post I have not seen too many > other that have done Gamma hope it works for you. E,ail if you would like. > Cindy W.

Response:

OK – now I have to tell you that my liver enzymes just came back elevated. My rheumy ordered a special blood test to determine if it is the Immuran. I hope not, because it’s working pretty well.

Response:

Gretchen wrote: > OK – now I have to tell you that my liver enzymes just came back > elevated. My rheumy ordered a special blood test to determine if it > is the Immuran. I hope not, because it’s working pretty well.

Oh, sorry to hear that! Will send prayers it’s not the Imuran, though maybe it’s best that it is just the med, because otherwise there might be something more serious going on. -Sharon — Visit my webpage: http://www.qc.edu/~sperlof1/stills/webpage.html ~Integrity~ Integrity is one of the several paths. It distinguishes itself from the others because it is the right path… and the only one upon which you will never get lost. -M.H. McKee

Response:

I’m not familar with imuran. Is that the drug that is used last in Lupus? Is it a chemo drug like methotrexate? Do doctors generally try mtx first or is it something where they may have you take both?? I’ve read several posts with people saying they take imuran and I just started the mtx 2weeks ago. What does imuran work the best for?? Thanks Rebecca

Response:

Hi Rebecca, I don’t know much about either except that I started Imuran about 2 wks ago and have never taken Meth. >Do doctors generally try mtx first or >is it something where they may have you take both?? >I’m not familar with imuran. Is that the drug that is used last in Lupus? >What does imuran work the best for??

The Imuran is suppose to help for my muscle aches and fatigue. I hope they are right. : ) Susan

Response:

Hi Rebecca: I don’t know the differences, pros and cons, etc., with methotrexate and Imuran. But I believe they’re both serious immune-suppressant drugs. (Metho was historically a popular rheumatoid arthritis …) According to my reading, metho isn’t good for people with serious kidney or skin issues… I don’t think it would be fair to say Imuran is used "last" — because Imuran’s generally considered a step down from cyclophosimide; a rather nasty chemo drug, usually given intravenously. (I was on cyclo. at my worst, then Imuran for awhile, then we switched to something called Cell-Cept, that didn’t work very well for me, and I’ve been back on Imuran since September…) Grace.

Response:

Hi Susan- Have you noticed anything yet? What other meds are you on? Rebecca "SAppl38220" <sappl38…@aol.com> wrote in message

news:20030119221510.20859.00000053@mb-fq.aol.com… – Hide quoted text — Show quoted text -> Hi Rebecca, > I don’t know much about either except that I started Imuran about 2 wks ago and > have never taken Meth. > >Do doctors generally try mtx first or > >is it something where they may have you take both?? > >I’m not familar with imuran. Is that the drug that is used last in Lupus? > >What does imuran work the best for?? > The Imuran is suppose to help for my muscle aches and fatigue. I hope they are > right. : ) > Susan

Response:

Hi Grace- Thanks for the info. I’ve never even heard of cyclphosimide. I’ll do a little research. Do they use that for people with organ damage ??? That hasn’t happened yet. Does the Imuran seem to work for you? Are you taking it with the plaquenil? Rebecca "Grace Casselman" <gr…@casselman.net> wrote in message

news:3E2B727E.9E3BB6FC@casselman.net… – Hide quoted text — Show quoted text -> Hi Rebecca: > I don’t know the differences, pros and cons, etc., with methotrexate and Imuran. > But I believe they’re both serious immune-suppressant drugs. (Metho was > historically a popular rheumatoid arthritis …) According to my reading, metho > isn’t good for people with serious kidney or skin issues… > I don’t think it would be fair to say Imuran is used "last" — because Imuran’s > generally considered a step down from cyclophosimide; a rather nasty chemo drug, > usually given intravenously. > (I was on cyclo. at my worst, then Imuran for awhile, then we switched to > something called Cell-Cept, that didn’t work very well for me, and I’ve been > back on Imuran since September…) > Grace.

Response:

Hi Rebecca: > I’ve never even heard of cyclphosimide. I’ll do a > little research. Do they use that for people with organ damage ???

Oops.. here’s the correct spelling: Cyclophosphamide. Yes, I believe it’s used quite often for people with kidney problems, at least. However, in my case, my biggest problem was my muscles… and I had four "cycles" of the intravenous treatment. I can’t tell you if it helped, because I had so much going on then; chemo, gammagobulin, intravenous steroids, etc., etc… Something helped though… > Does the Imuran seem to work for you?

Well, it works somewhat. It works better for me than Cell-Cept. But we’re still struggling and adjusting medication, trying to get the disease under control. Grace.

Response:

>Hi Susan- >Have you noticed anything yet? What other meds are you on? >Rebecca

Rebecca, I am on Plaq (3 yrs), Pred (tapering) and Imuran ( 2 wks). I have not noticed anything with the Imuran yet, but keeping my fingers crossed. It is not a last resort in my case as there are quite a few (meds) that I have not yet tried. Good luck Susan

Response:

Grace, I had to poat as we have had alot in common in treatments. I did cytoxin for a year in pill form daily it was a bad idea did more damage than good. Then last year I did Gamma all year weekly infusions that finally I was getting so sick from I stopped them. I got the aseptic menengitis plus my central lines became infected and I started running high fevers for weeks after each treatment. Took them along time to listen to me and do a culture then a week in hospital recovering from that. Now they want me to do the MTX and cell cept has been suggested. How did that work on you you said it did not make you feel good, what did it do? I have tried everything else. I have Lupus with central nervous system involvement, polymyositis and Diabetes. I am on pred and depakote for seizures and migraines plus all my diabetes meds and premarin as well as pain meds and asacol for stomach for colitis and proctitis. As for your remission post I am waiting for mine too it will be 5 years in April. I have in all honestly just gotten worse physically but better in my heart for all the wonderful people I have met and gotten to know ant now I take time to notice the world around me so is a trade off I suppose. The real hard part is how it effects the people we love my kids are 13 and 21 and I see the pain in their eyes and the denial. That hurts more than any joint or any other kind of pain I could ever have. Anyway I just had to post I have not seen too many other that have done Gamma hope it works for you. E,ail if you would like. Cindy W. – Hide quoted text — Show quoted text -Grace Casselman wrote: > Hi Rebecca: > I don’t know the differences, pros and cons, etc., with methotrexate and Imuran. > But I believe they’re both serious immune-suppressant drugs. (Metho was > historically a popular rheumatoid arthritis …) According to my reading, metho > isn’t good for people with serious kidney or skin issues… > I don’t think it would be fair to say Imuran is used "last" — because Imuran’s > generally considered a step down from cyclophosimide; a rather nasty chemo drug, > usually given intravenously. > (I was on cyclo. at my worst, then Imuran for awhile, then we switched to > something called Cell-Cept, that didn’t work very well for me, and I’ve been > back on Imuran since September…) > Grace.

Response:

Fine..they are miles away from us but devastating for Canberra… Final tally 452 homes burned down, 300 injured, 4 dead…in 10 hours Lyndal "John Kakouris" <tree…@earthlink.net> wrote in message

news:ezjX9.5033$bL4.498518@newsread2.prod.itd.earthlink.net… – Hide quoted text — Show quoted text -> Yes. I’m supposed to up my dose next week from 3 pills to 6. (2.5mg) I > seem to be doing ok on 3 but am concerned that 6 may make me sick. So far > I’ve just had some nausea and headaches. How are you surviving the fires?? > Rebecca > "Lyndal Parker-Newlyn and Phill Newlyn" <l.p.new…@bigpond.com> wrote in > message news:iPgX9.29688$jM5.76766@newsfeeds.bigpond.com… > > Hi Rebecca > > I’ve been on Imuran for about 7-8 months now. Imuran (Azathioprine) and > > Methotrexate are both immunosuppressants. They have different side > > effects,but are probably just as evil as each other (grin) and most > rheum’s > > will try one and then the other. I’ve been on them since April or so…on > > Imuran that is. I can take up to 125mg, but when I get up to 150 I get > sick > > (fevers, diarrhoea etc). I have nor probs at 125 though. It has made me > > feel a lot better, but my antibody levels are not decreasing as he hoped, > so > > we may try methotrexate next. Here the rheum’s rarely use both as they > feel > > the combination is more dangerous and unpredictable. Cyclophosphamide is > > the next option but something that you reserve for people with organ > effects > > (as opposed to just feeling like crap!) because it has a nasty range of > > possibilities including bladder cancer in the long term. But for some > > loopies, they have no choice. > > Does that help? > > Lyndal > > "John Kakouris" <tree…@earthlink.net> wrote in message > > news:XkJW9.2070$bL4.201175@newsread2.prod.itd.earthlink.net… > > > I’m not familar with imuran. Is that the drug that is used last in > Lupus? > > > Is it a chemo drug like methotrexate? Do doctors generally try mtx > first > > or > > > is it something where they may have you take both?? I’ve read several > > posts > > > with people saying they take imuran and I just started the mtx 2weeks > ago. > > > What does imuran work the best for?? > > > Thanks > > > Rebecca

Response:

Hi Cindy: Thank you for your post. It is helpful and somehow reassuring to talk to someone else who has had some of the same experiences! In the past, it seems the gammagobulin has brought down my muscle inflammation; we’ll see what happens this time. Basically they’re restarting gamm for the third time. It may be that I just need to stay on it. I hate being hooked up in the hospital three half-days a month. It’s tedious and the needles, etc., sometimes quite hurt; but the worst part is just the reminder that I’m a sick person, among all the other sick people, hooked up to machines in the hospital. I was interested that you mentioned fevers, as it seemed to me that my fevers were worse often just after the gamm, but it’s difficult for me to say for sure, as it’s very common for me to run fevers anyhow. (Although now they’re more often >>37.7-38 C, compared to the 39-40C fevers that knocked me out about six months ago…) >>>> cell cept has been suggested. How did that work

on you you said it did not make you feel good, what did it do? My nephrologist raved about Cell-Cept, and wanted me on it from the beginning (after I came off the cyclo/chemo) but it took about a month for him to figure out whether my drug plan covered it, etc. So during that time, he started me on Imuran, and I continued to improve. But then he switched me to the Cell-Cept, and I seemed to plateau, and then flare. First he increased the Cell-Cept, but when I was still flaring, I asked if I could try the Imuran again. After that the flare subsided considerably. (However, I re-started the Gamm again at that time, so as always, I’m not sure what worked…) (So basically, it’s not that I noticed bad side-effects on it, just that it didn’t seem to suppress the flaring of my muscle-related inflammation. But as I said, my nephrologist raved about it; that many of his patients had found it rather miraculous. Then again, most of his patients have serious kidney issues, which I don’t, at this point, thank God.) I was on Cell-Cept for four or five months…but have been back on Imuran since Sept. >>>>>now I take time to notice the world around me so is a trade off I suppose.

I know what you mean! I really so much appreciate when I’m able to do things with my family, for instance… even if it’s just going out to lunch or for a small walk to the park. There was a time I definitely couldn’t do that! Grace.

Response:

I started at 10 mg (4 pills a week) and then switched to injections…started at 10 ml and then went to 12.5 and then 15mg. Then we took me back down to 10mg and I decided trying the pills again. Been having similar stomach problems all over again so I’m considering switching back to injections. hope that helps…and hang in there. ~julia "John Kakouris" <tree…@earthlink.net> wrote in message

news:gugX9.4529$Sv3.483322@newsread1.prod.itd.earthlink.net… – Hide quoted text — Show quoted text -> Thanks for the encouragement. What dose are you on?? Do you take the pills > or injections? > Rebecca > "Jules" <itsjul…@hotmail.com> wrote in message > news:b0jkqp$omk$1@bob.news.rcn.net… > > I’ve been on mtx for over 2 years (in addition to plaquenil and quinacrine > > as my main lupus drugs). Anyhow, from the research that i’ve done here’s > it > > seems that mtx is useful in more arthritic lupus patients…it’s taken > > weekly and in several papers that I’ve read is claimed to be great for > > moderate lupus with joint pain. About a year and a half ago my docs > wanted > > to switch me to either imuran or cellcept (pretty similar > drugs…according > > to several of my docs cellcept is a more designer version of imuran to > > reduce the potential side effects of imuran). They were considering this > > because they weren’t sure that the mtx was working… > > Cellcept/Imuran are other immunosuprresive drugs and from the journal > > searches I’ve done are more common among patients with organ involvement. > > Nearly every paper I’ve read about cellcept has been about lupus > nephritis. > > As for the idea of a last resort, none of these drugs are that sort of a > > thing. They’re not as low-key as plaquenil (which nearly every lupus > > patient has been on or tried) but they’re definitely not cytoxan > treatments. > > Give yourself time with the mtx…I noticed a decent improvement in joints > > and such after a few months, but it took longer to get over some of the > > larger hurdles…a higher dose helped out a little…but again, that was > > after about 8 months of being on it. > > hope this helps. > > take care, > > julia > > "John Kakouris" <tree…@earthlink.net> wrote in message > > news:XkJW9.2070$bL4.201175@newsread2.prod.itd.earthlink.net… > > > I’m not familar with imuran. Is that the drug that is used last in > Lupus? > > > Is it a chemo drug like methotrexate? Do doctors generally try mtx > first > > or > > > is it something where they may have you take both?? I’ve read several > > posts > > > with people saying they take imuran and I just started the mtx 2weeks > ago. > > > What does imuran work the best for?? > > > Thanks > > > Rebecca

Response:

Yes. I’m supposed to up my dose next week from 3 pills to 6. (2.5mg) I seem to be doing ok on 3 but am concerned that 6 may make me sick. So far I’ve just had some nausea and headaches. How are you surviving the fires?? Rebecca "Lyndal Parker-Newlyn and Phill Newlyn" <l.p.new…@bigpond.com> wrote in message news:iPgX9.29688$jM5.76766@newsfeeds.bigpond.com… – Hide quoted text — Show quoted text -> Hi Rebecca > I’ve been on Imuran for about 7-8 months now. Imuran (Azathioprine) and > Methotrexate are both immunosuppressants. They have different side > effects,but are probably just as evil as each other (grin) and most rheum’s > will try one and then the other. I’ve been on them since April or so…on > Imuran that is. I can take up to 125mg, but when I get up to 150 I get sick > (fevers, diarrhoea etc). I have nor probs at 125 though. It has made me > feel a lot better, but my antibody levels are not decreasing as he hoped, so > we may try methotrexate next. Here the rheum’s rarely use both as they feel > the combination is more dangerous and unpredictable. Cyclophosphamide is > the next option but something that you reserve for people with organ effects > (as opposed to just feeling like crap!) because it has a nasty range of > possibilities including bladder cancer in the long term. But for some > loopies, they have no choice. > Does that help? > Lyndal > "John Kakouris" <tree…@earthlink.net> wrote in message > news:XkJW9.2070$bL4.201175@newsread2.prod.itd.earthlink.net… > > I’m not familar with imuran. Is that the drug that is used last in Lupus? > > Is it a chemo drug like methotrexate? Do doctors generally try mtx first > or > > is it something where they may have you take both?? I’ve read several > posts > > with people saying they take imuran and I just started the mtx 2weeks ago. > > What does imuran work the best for?? > > Thanks > > Rebecca

Response:

Hi Rebecca I’ve been on Imuran for about 7-8 months now. Imuran (Azathioprine) and Methotrexate are both immunosuppressants. They have different side effects,but are probably just as evil as each other (grin) and most rheum’s will try one and then the other. I’ve been on them since April or so…on Imuran that is. I can take up to 125mg, but when I get up to 150 I get sick (fevers, diarrhoea etc). I have nor probs at 125 though. It has made me feel a lot better, but my antibody levels are not decreasing as he hoped, so we may try methotrexate next. Here the rheum’s rarely use both as they feel the combination is more dangerous and unpredictable. Cyclophosphamide is the next option but something that you reserve for people with organ effects (as opposed to just feeling like crap!) because it has a nasty range of possibilities including bladder cancer in the long term. But for some loopies, they have no choice. Does that help? Lyndal "John Kakouris" <tree…@earthlink.net> wrote in message

news:XkJW9.2070$bL4.201175@newsread2.prod.itd.earthlink.net… – Hide quoted text — Show quoted text -> I’m not familar with imuran. Is that the drug that is used last in Lupus? > Is it a chemo drug like methotrexate? Do doctors generally try mtx first or > is it something where they may have you take both?? I’ve read several posts > with people saying they take imuran and I just started the mtx 2weeks ago. > What does imuran work the best for?? > Thanks > Rebecca

Response:

Thanks for the information, Gretchen! Grace.

Response:

Thanks for the encouragement. What dose are you on?? Do you take the pills or injections? Rebecca "Jules" <itsjul…@hotmail.com> wrote in message

news:b0jkqp$omk$1@bob.news.rcn.net… – Hide quoted text — Show quoted text -> I’ve been on mtx for over 2 years (in addition to plaquenil and quinacrine > as my main lupus drugs). Anyhow, from the research that i’ve done here’s it > seems that mtx is useful in more arthritic lupus patients…it’s taken > weekly and in several papers that I’ve read is claimed to be great for > moderate lupus with joint pain. About a year and a half ago my docs wanted > to switch me to either imuran or cellcept (pretty similar drugs…according > to several of my docs cellcept is a more designer version of imuran to > reduce the potential side effects of imuran). They were considering this > because they weren’t sure that the mtx was working… > Cellcept/Imuran are other immunosuprresive drugs and from the journal > searches I’ve done are more common among patients with organ involvement. > Nearly every paper I’ve read about cellcept has been about lupus nephritis. > As for the idea of a last resort, none of these drugs are that sort of a > thing. They’re not as low-key as plaquenil (which nearly every lupus > patient has been on or tried) but they’re definitely not cytoxan treatments. > Give yourself time with the mtx…I noticed a decent improvement in joints > and such after a few months, but it took longer to get over some of the > larger hurdles…a higher dose helped out a little…but again, that was > after about 8 months of being on it. > hope this helps. > take care, > julia > "John Kakouris" <tree…@earthlink.net> wrote in message > news:XkJW9.2070$bL4.201175@newsread2.prod.itd.earthlink.net… > > I’m not familar with imuran. Is that the drug that is used last in Lupus? > > Is it a chemo drug like methotrexate? Do doctors generally try mtx first > or > > is it something where they may have you take both?? I’ve read several > posts > > with people saying they take imuran and I just started the mtx 2weeks ago. > > What does imuran work the best for?? > > Thanks > > Rebecca

Response:

I’ve been on mtx for over 2 years (in addition to plaquenil and quinacrine as my main lupus drugs). Anyhow, from the research that i’ve done here’s it seems that mtx is useful in more arthritic lupus patients…it’s taken weekly and in several papers that I’ve read is claimed to be great for moderate lupus with joint pain. About a year and a half ago my docs wanted to switch me to either imuran or cellcept (pretty similar drugs…according to several of my docs cellcept is a more designer version of imuran to reduce the potential side effects of imuran). They were considering this because they weren’t sure that the mtx was working… Cellcept/Imuran are other immunosuprresive drugs and from the journal searches I’ve done are more common among patients with organ involvement. Nearly every paper I’ve read about cellcept has been about lupus nephritis. As for the idea of a last resort, none of these drugs are that sort of a thing. They’re not as low-key as plaquenil (which nearly every lupus patient has been on or tried) but they’re definitely not cytoxan treatments. Give yourself time with the mtx…I noticed a decent improvement in joints and such after a few months, but it took longer to get over some of the larger hurdles…a higher dose helped out a little…but again, that was after about 8 months of being on it. hope this helps. take care, julia "John Kakouris" <tree…@earthlink.net> wrote in message

Response:

I’ve been on Imuran for 7 months and have seen a big improvement in my energy level and photosensitivity. I have fewer days that I feel crummy. I also take Plaquinil and Adabrine (quinacrine – another anti-malarial). I just tapered off of Prednisone. My rheumy thinks Imuran is a better choice for me, but he said mtx was a good option, too. I haven’t experienced a remission, and my lupus is still mildly active – but I am much more functional. I haven’t noticed any side effects, although I worry about long term consequences, like an increased risk of leukemia and other cancers. So far my blood counts have been good, and I haven’t had any infections (another possible side effect). Hope this helps. Gretchen

Response:

Hi Cindy, So glad to see that you felt like reading the posts and posting on this one. I’m still trying to find that magic wand to wave on you! Hugs, Sherry "Ward" <jcwar…@earthlink.net> wrote in message

news:3E2CB0A7.3277D3A6@earthlink.net… – Hide quoted text — Show quoted text -> Grace, I had to poat as we have had alot in common in treatments. I did cytoxin > for a year in pill form daily it was a bad idea did more damage than good. Then > last year I did Gamma all year weekly infusions that finally I was getting so sick > from I stopped them. I got the aseptic menengitis plus my central lines became > infected and I started running high fevers for weeks after each treatment. Took > them along time to listen to me and do a culture then a week in hospital recovering > from that. > Now they want me to do the MTX and cell cept has been suggested. How did that work > on you you said it did not make you feel good, what did it do? I have tried > everything else. I have Lupus with central nervous system involvement, polymyositis > and Diabetes. I am on pred and depakote for seizures and migraines > plus all my diabetes meds and premarin as well as pain meds and asacol for stomach > for colitis and proctitis. As for your remission post I am waiting for mine too it > will be 5 years in April. I have in all honestly just gotten worse physically but > better in my heart for all the wonderful people I have met and gotten to know ant > now I take time to notice the world around me so is a trade off I suppose. The real > hard part is how it effects the people we love my kids are 13 and 21 and I see the > pain in their eyes and the denial. That hurts more than any joint or any other kind > of pain I could ever have. Anyway I just had to post I have not seen too many > other that have done Gamma hope it works for you. E,ail if you would like. > Cindy W. > Grace Casselman wrote: > > Hi Rebecca: > > I don’t know the differences, pros and cons, etc., with methotrexate and Imuran. > > But I believe they’re both serious immune-suppressant drugs. (Metho was > > historically a popular rheumatoid arthritis …) According to my reading, metho > > isn’t good for people with serious kidney or skin issues… > > I don’t think it would be fair to say Imuran is used "last" — because Imuran’s > > generally considered a step down from cyclophosimide; a rather nasty chemo drug, > > usually given intravenously. > > (I was on cyclo. at my worst, then Imuran for awhile, then we switched to > > something called Cell-Cept, that didn’t work very well for me, and I’ve been > > back on Imuran since September…) > > Grace.

Response:

Posted in Lupus Nephritis | No Comments » |

Need a diagnosis…and to see if this sounds familiar…

Question:

Here ya go http://www.medem.com/MedLb/article_detaillb.cfm?article_ID=ZZZ7C4T46J… Only I believe the liver is actually larger and the right lower tip almost reaches the pelvic area (right side). I sure know where the gallbladder is. (or was) and where the pains were before they took it out. J PS Rx’s ARE foreign language. Gotta laugh at my docs. One can’t read the hand-writing of the other LOL Some words we can’t even guess at. <g> I was pretty good at biology too. Got a special award for it, but quite honestly had no idea what I was looking at under the microscope (for tests) so I took guesses. But taking animals apart, different story. J PS osmosis, photosynthesis, transpiration and how do plants breathe? stoma ? http://www.ecb.org/guides/realworldsci/seeds.htm PPS did you know that ozone inhibits plants from breathing? http://www.enn.com/enn-news-archive/1999/12/120899/ozone_7989.asp okay, good night, going to bed and dream about plants LOL – Hide quoted text — Show quoted text -Beverley wrote: > Seriously, my medical knowledge could fit in a thimble. I couldn’t tell you > which side the liver is on or where the gall bladder is located. Rx’s to me > might as well be a foreign language. About the only thing I can tell you is > that it hurts right here! > I think I have a mental block about medical stuff. Because I can tell you > how a plant breaths and why the leaves change color in the fall and how they > reproduce, etc. So obviously I don’t have a problem with biology – just > human biology. LOL Yeah I know where babies come from and how they get > here – just ask George. He’ll tell you sneezing around me was very > dangerous. ;-> > Bev

Response:

Yes Sulfa is an evil drug in my opinion/experience. In my 3rd round of antibotics (Sulfa) I got hives in very odd places. They started on my hands, redness, itching, then as the redness spread the begining pieces started to puff up and swell, it contiuned up my arms to my chest down to my breasts, an down my chest and belly. But the worst part was the breasts, the redness, then itching then the swelling all the way to and including the nipples. I could feel every bit of my breasts and nipples and they ALL itched, I stayed like this for two days and it took an additional 4 days for all the redness to go away. Yes I believe Sulfa is evil and if needed to be taken with great caution. – Hide quoted text — Show quoted text -> Sulfa is very much contraindicated for Lupies.

Response:

Yes, well, I’d been wondering about the reaction to Sulfa in Lupies. and it ticks me off that there’s no mention of Lupus on these meds. http://www.nlm.nih.gov/medlineplus/druginfo/sulfonamidessystemic20254… Note the subtle… "Sulfonamides may cause your skin to be more sensitive to sunlight than it is normally. Exposure to sunlight, even for brief periods of time, may cause a skin rash, itching, redness or other discoloration of the skin, or a severe sunburn. When you begin taking this medicine: " (are they afraid people might actually figure out for themselves that they have Lupus? They also mention "estrogens" and I do believe that breast tissues are "estrogenic" so perhaps why the rash was worse there for you? On the other hand, when I was prescribed them (3 years ago), I got acute pain all over my torso (front and back), more like muscle cramps and "shotgun" pains in my abdomen and kidney pains (flank, both sides). The only mention there of cramping relates to bowel (watery and severe diarrhea)..which I did not have. So severe that the walk-in clinic refused to see me and sent me to ER. I’d already been there in the middle of the night and they didn’t have a clue what the problem was, just checked my heart.. I eventually fell asleep and woke up, hours later and the pain had gone. At that point, I didn’t suspect the Sulfa, went home, took another, went to sleep and the pain woke me up again..that’s when I went to the walkin clinic who prescribed the med..who sent me back to ER, who re-checked my heart. After hours and waking up with no more pains, I "walked". They were "busy" chatting over coffee and with some young guy who was heading out west on a skiing trip. I was ticked. (their reports about the visits show nothing, ‘cept one wrote "allergy to Sulfa?" Later I looked up Porphyria (AIP) and it seemed to fit, but they tell me that the tests they did for me since, don’t show Porphyria. So the mystery continues. Except my Dad (I later found out) had paralysis from this med (during the war). After stopping Sulfa and replacing with Penicillin, his face unparalyzed. I’m not totally convinced that they did the porphyria tests correctly. Still searching, because now the pains continue. Sorry, if I’ve told this here before. (since my bro and I have many similarities, and now because of the Lupus), I’ve told him to please never ever let them give him Sulfa. Meantime, I’m currently researching parathyroidism and whether that might be related to what happened (and continues) to me. Anyhow, hope all the Lupies here keep this in mind and question every antibiotic they’re given, because sometimes they "hide" under other names…septra is one. J – Hide quoted text — Show quoted text -Paula Love wrote: > Yes Sulfa is an evil drug in my opinion/experience. In my 3rd round of > antibotics (Sulfa) I got hives in very odd places. They started on my hands, > redness, itching, then as the redness spread the begining pieces started to > puff up and swell, it contiuned up my arms to my chest down to my breasts, > an down my chest and belly. But the worst part was the breasts, the redness, > then itching then the swelling all the way to and including the nipples. I > could feel every bit of my breasts and nipples and they ALL itched, I stayed > like this for two days and it took an additional 4 days for all the redness > to go away. Yes I believe Sulfa is evil and if needed to be taken with great > caution. > > Sulfa is very much contraindicated for Lupies.

Response:

In article <3D046AB2.CA319…@execulink.com>, J <jwoot…@execulink.com> wrote >Yes, well, I’d been wondering about the reaction to Sulfa in Lupies.

<URL:http://www.kitzbuhel.demon.co.uk/lupus/katfaq.htm#newdrugs> — Andy [Editor, Austrian Philatelic Society] For Austrian philately <URL:http://www.kitzbuhel.demon.co.uk/austamps> For Lupus <URL:http://www.kitzbuhel.demon.co.uk/lupus> For my other interests <URL:http://www.kitzbuhel.demon.co.uk>

Response:

Thanks Andy, but it doesn’t give detail "Celebrex and Vioxx – in the class of drugs known as "COX-II inhibitors" – can cause severe allergic reactions in people sensitive to sulfonamides a.k.a. "sulfa" drugs. Many lupus patients are highly sensitive to sulfa drugs." …like if a lupie gets a rash, how do they know they haven’t just gotten a bit more sun exposure, rather than from the sulfa drug itself? Are there other Lupie reactions to sulfa? That kind of thing, I was wondering and Lupies might want to watch out for… TIA J PS This morning I was reading where there’s 2 kinds of allergic reactions, wish I could remember where, so I could explain it here. – Hide quoted text — Show quoted text -Andy wrote: > In article <3D046AB2.CA319…@execulink.com>, J <jwoot…@execulink.com> > wrote > >Yes, well, I’d been wondering about the reaction to Sulfa in Lupies. > <URL:http://www.kitzbuhel.demon.co.uk/lupus/katfaq.htm#newdrugs>

Response:

In article <zGzM8.67054$EW5.3772…@e3500-atl2.usenetserver.com>, DarrylFran <darrylf…@bellsouth.net> wrote:

[...] >My urine got real dark like Coke, so I went to ER 2 days before >Thanksgiving. The doctor freaked when he saw the urine, started barking >orders.

This might be a stupid question, but has any checked you for porphyria? Especially since you also said your liver tests were off the scale for a while, then went back to normal… — Lee M.Thompson-Herbert l…@retro.com KoX 1995, SP4 Head Muso, White Rats Morris Member, Knights of Xenu (1995). Chaos Monger and Jill of All Trades. "A head-on collision between Morticia Adams and Martha Stewart"

Response:

"BJ" <B…@sk.nojunk.ca> wrote in message

news:ug72dn3u2uqr9a@corp.supernews.com… > Hi again Fran, > My brain has kicked in again, now that I had a good night’s sleep. Is it the > same rheumy that originally said you have lupus that is now saying > fibromyalgia? I would suggest that you don’t mention that diagnosis when you > see the new rheumy. I know so many people that have been told they have FM. > It seems that once a doctor hears that term, they don’t look any further. It > often appears to be an easy out for them.

Oddly enough, I got the Fibro DX *after* the Lupus DX. Before that I’d been tested for RA, gout, and a host of other "possibilities". > I was also wondering if anyone has > checked for RA. The painful fingers made me think about that. Other > autoimmune diseases can produce a positive ANA. I hope you will join us on a > regular basis. Will you let us know what the new doc has to say? Most of us > went through the long process that you are experiencing now. We do > understand. > BJ-Sk. Canada

That we do!

Response:

Hi Fran. I haven’t had the lung problems that you have had but many of the other symptoms have been there at some point in the past 7 years. I too have a dx of FM – BUT I also am treated as a Lupus patient even though I don’t have a full diagnosis (a common term for this is UCTD – Undifferentiated Connective Tissue Disease). Your blood test results are positive. But they are not considered "high" or "significant" *EXCEPT* for the fact that they are all occuring together and that alone should be enough for a doctor to at the very least keep you on Plaquenil. May I has why only 5 months if it was helping? it takes as many as 6 months to reach full efficacy in some people. ANA "pos" is 1:80. But 1:320 is not that high and many doctors will dismiss it (again, looking at the big picture it seems foolish to do so). it is seen in something like 95% of all lupus patients. meaning that about 5% do not have pos. ANA titre. Doctors are trained to treat the 5% as 0% – I don’t know why but it’s been consistent in my experience. anti-dsDNA is seen in from 30-60% of all patients. The range there is wide because the number keep changing from one report to another. But obviously that means between 40 and 70% of all patients have *no* anti-dsDNA. (however, anti-dsDNA is one of the few tests that are very specific for lupus) ESR of 35 says something is wrong but can not tell you more than that. High ESR is more about 70-80. 35 shouldn’t be ignored, it’s still higher than it should be. how long were you on the ibuprofen and at what dose? liver enzymes usually go wacko with meds and it’s possible this was the major issue for you. It is unusual to see liver damage due to lupus itself. Though there are other autoimmune conditions that might affect the liver. Your symptoms are enough, IMO, to justify disease modifying treatment (Plaquenil?) and it’s a fairly benign drug. depends on why you were off of it. There are risks to the eyes from plaquenil but there is a greater risk that autoimmune disease will damage our eyes before the plaquenil will. And the risk of plaquenil to the eyes is quite low. I’ve been on it for a while now and I get an eye exam every 6 months – so far doing great. As far as what my dx was and the process.. i’d like to refer you to my website. you don’t need to read the whole thing – just a couple of the pages. They’re not tooooooooo long-winded. You are not alone in your frustration and I think that the more ammo we have for talking to these docs the more help we can get. I asked rheumy to "humour" me and prescribe the plaquenil. now that she has seen my improvement she has no desire to take me off the drug. I know many folks w/o solid dx’s that get meds to help control the disease. I think that this is only fair to you. giving you OTC pain meds and sending you on your way is absurd when it is so very obvious that your condition is physiological, not psychological. all my .02 KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq30.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’

Response:

"J" <jwoot…@execulink.com> wrote in message

news:3D03D931.A2C08339@execulink.com… > Not stupid, I thought of that one too. but I don’t know all the types of > porphyria, to see if they match what (the symptoms) the poster described. > the acute pain types are sometimes triggered by infections and/or some types > of antibiotics. Sulfa is one..

Sulfa is very much contraindicated for Lupies.

Response:

Seriously, my medical knowledge could fit in a thimble. I couldn’t tell you which side the liver is on or where the gall bladder is located. Rx’s to me might as well be a foreign language. About the only thing I can tell you is that it hurts right here! I think I have a mental block about medical stuff. Because I can tell you how a plant breaths and why the leaves change color in the fall and how they reproduce, etc. So obviously I don’t have a problem with biology – just human biology. LOL Yeah I know where babies come from and how they get here – just ask George. He’ll tell you sneezing around me was very dangerous. ;-> Bev "J Rogow" <JRo…@Newsguy.com> wrote in message

news:advskq013a8@enews4.newsguy.com… – Hide quoted text — Show quoted text -> "Beverley" <pottings…@sybercom.net> wrote in message > news:ug6k32sheid685@corp.supernews.com… > > Oh, it does sound way too familiar. Pat you on your head, maybe it is, > maybe > > it isn’t. OMG, she’s really sick, treat symptoms. > > Wish I had a magic wand but I don’t. I think the key is finding a good > > doctor. Then getting the treatment that is needed. > AMEN to that! > It took me 12 years find a Rheumy who would *listen* to me. > > Lupus has several "categories". And lupus is only one of several different > > diseases that fall under the autoimmune heading. Lupus also is sometimes > > hard to diagnose but with your history and the high ANA I would think > > someone would be able to point to lupus and say let’s treat this. (I’m not > a > > doctor, in fact I’m the medical idiot of the group, > Don’t sell yourself short! > > but it sounds like you > > have something going on there. Maybe a doctor will give you a slightly > > different diagnosis such as Raynaulds but it would still fall under the > > heading of lupus. But to me it sounds like you probably could be diagnosed > > with lupus SLE.) > > I think doctors are hesitant to Dx lupus – I’m not sure why. Maybe because > > it makes getting medical insurance more difficult. A one sixty ANA would > be > > considered positive for lupus so …?

Response:

Lee Thompson-Herbert wrote: > In article <zGzM8.67054$EW5.3772…@e3500-atl2.usenetserver.com>, > DarrylFran <darrylf…@bellsouth.net> wrote: > [...] > >My urine got real dark like Coke, so I went to ER 2 days before > >Thanksgiving. The doctor freaked when he saw the urine, started barking > >orders. > This might be a stupid question, but has any checked you for porphyria? > Especially since you also said your liver tests were off the scale for > a while, then went back to normal…

Not stupid, I thought of that one too. but I don’t know all the types of porphyria, to see if they match what (the symptoms) the poster described. the acute pain types are sometimes triggered by infections and/or some types of antibiotics. Sulfa is one.. Not sure about Levaquin and porphyria (same family as Cipro, which I have problems with too)…and her symptoms seem more Lupus-like than porphyria, but it’s possible to have both too. Repeating again, in case she wants to check this out http://www.uq.edu.au/porphyria/ Actually the weirdest thing happened after I had a course of Cipro 3 years ago. My doctor had run some blood tests because Ic ontinued to be ill and get worse. So the secretary calls me and says I have Hepatitis (jaundice).. when I went for follow-up, the doc said "oh no, it just means you’ve had it sometime in the past, not now"..weird eh? And nobody in my family can recall me having it, even as a baby. Very weird. I do have Cipro on my "do not take" list (just in case, along with sulfa). J

Response:

Hi BJ How are you today? No worries, after I re-read my post I realized I think the ? got answered by what I pasted. oops..just found it http://www.hamline.edu/~wnk/lupus/archive-l/msg13356.html from: http://www.fpnotebook.com/RHE35.htm Interpretation: ANA Staining Patterns Systemic Lupus Erythematosis specific patterns ANA Rim Pattern ANA Homogenous Pattern CREST Syndrome and Scleroderma Specific Patterns ANA Nucleolar Pattern ANA Centromere Pattern Non-Specific Patterns ANA Speckled Pattern ANA Diffuse Pattern With more information: Speckled Pattern – Most common, least specific Disorders Systemic Lupus Erythematosus Mixed Connective Tissue Disease Scleroderma Sjogren’s Syndrome Or from: http://dpalm.med.uth.tmc.edu/Interps/ANA.html#4 High Titer (greater than 1:80) Speckled Pattern High titered (> 1:80) speckled pattern suggests antibodies to extractable nuclear antigens (ENA). ENA testing in this laboratory includes Sm (associated with SLE), RNP (Mixed Connective Tissue Disease), SSA (Sjogren’s Syndrome-SICCA complex and SLE) and Scl-70 (scleroderma). Specific assays for Sm, RNP, SSA, SSB or Scl-70 can be ordered. Low Titer (1:40) Speckled Pattern Sera from some individuals with no apparent connective tissue disease have low titered speckled ANA’s. The incidence and titers in these individuals increase with age. If an autoimmunce connective tissue disease is suspected, a repeat ANA is suggested on follow-up visit to determine if the titer is rising. Or from http://www.labcorp.com/datasets/labcorp/html/chapter/mono/se018500.htm The pattern of nuclear fluorescence (reflecting specificity for various diseases). Homogeneous and/or nuclear rim (peripheral) pattern correlates with antibody to native DNA and deoxynucleoprotein and bears correlation with SLE, SLE activity, and lupus nephritis. Homogenous (diffuse) pattern suggests SLE or other connective tissue diseases. Speckled pattern correlates with antibody to nuclear antigens extractable by saline; it is found in many disease states, including SLE and scleroderma. When antibodies to DNA and deoxyribonucleoprotein are present (rim and homogenous pattern), there may be interference with the detection of speckled pattern. Nucleolar pattern is seen in sera of patients with progressive systemic sclerosis and Sj

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Kidney Transplant

Question:

Hi all… I had lupus nephritis and kidney failure. Was on dialysis for 2 years…..got callled for a kidney on Aug. 29. Had surgery on the 30th. The kidney is doing well.. There was hope when I thought there was none!!!! Thanks to all who told me not to give up!!! Love..Donna

Response:

Hi Donna, Way to go! I hope you have perfectly smooth sailing from here on. You’ve probably gotten used to the medications by now. Are you taking FK and Cellcept, or Cyclosporine? Keep in touch. I can’t help you with the lupus side of things, but I do know a few things about being a tx patient. I would do it again in a heartbeat if I had to. Wes – Hide quoted text — Show quoted text -Pin0…@webtv.net wrote: > Hi all… > I had lupus nephritis and kidney failure. Was on dialysis for 2 > years…..got callled for a kidney on Aug. 29. Had surgery on the 30th. > The kidney is doing well.. There was hope when I thought there was > none!!!! Thanks to all who told me not to give up!!! > Love..Donna

Response:

On Tue, 18 Sep 2001 15:33:36 -0400 (EDT), Pin0…@webtv.net wrote: >Hi all… >I had lupus nephritis and kidney failure. Was on dialysis for 2 >years…..got callled for a kidney on Aug. 29. Had surgery on the 30th. >The kidney is doing well.. There was hope when I thought there was >none!!!! Thanks to all who told me not to give up!!! >Love..Donna

what a wonderful message… Best wishes, kcat

Response:

In article <24442-3BA7A190-…@storefull-146.iap.bryant.webtv.net>, Pin0…@webtv.net wrote >Hi all… >I had lupus nephritis and kidney failure. Was on dialysis for 2 >years…..got callled for a kidney on Aug. 29. Had surgery on the 30th. >The kidney is doing well.. There was hope when I thought there was >none!!!! Thanks to all who told me not to give up!!! >Love..Donna

Glad to hear it. — Andy [Editor, Austrian Philatelic Society] For Austrian philately <URL: http://www.kitzbuhel.demon.co.uk/austamps/> For Lupus <URL: http://www.kitzbuhel.demon.co.uk/lupus/> For my other interests <URL: http://www.kitzbuhel.demon.co.uk/>

Response:

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NIH

Question:

Hi Sandra, These questions are for you. However, I would appreciate advice from anyone who has any knowledge or experience regarding the National Institutes of Health. Apparently, I may qualify for two separate ongoing studies. One deals specifically with lupus, and requires referral by a rheumatologist. For me, this is not going to happen. The other study involves renal problems due to immune system dysfunction, and that covers a lot of ground. Lupus nephritis is only one of the kidney dysfunctions being studied. Alport Syndrome, my original diagnosis, is being studied as well. This study requires no referral. My questions: If I am admitted into one study, will I perhaps be able to "back door" into the other? Also, does one have to pay for treatment there? Thanks. Wes

Response:

Wes.. I have no personal experience with NIH, but I e-mail with some who have experience in a clinical trial for Wegener’s granulomatosis. It’s my understanding that one has to be referred by a physician (though from your message, perhaps not in all clinical trials). I believe on has to pay all expenses for the first evaluation trip. If accepted into a clinical trial, it’s my understanding that the care provided by NIH is free, and they pay for transportation and partially offset the cost of meals/housing. I also believe they continue to work through your current physician, keeping her/him involved. I’m pretty sure the medications are paid for by NIH whether received there, or at you local physician’s office or hospital. Again, I don’t know this for sure. If you go the the NIH web page www.nih.gov, you should be able to trace down not only clinical studies, but also policies relating to how the costs are handled. If nothing else, you should be able to find a name and e-mail address to ask about those policies. Best wishes for your successful treatment and remission. — Bruce

Response:

Just adding a thought here, Have you thought out the ‘clinical studies’ at the NIH or anywhere else , means that the test subjects are being experimented on with different treatments and there is no garantee you will be helped, often it goes the other way and may cause harm. Protect yourself as well as possible . Be cautious, Wishing you Peace — Zinn http://www.angelfire.com/zine2/PandorasChemicalBox/ "John W. Johnston, Jr." <wes…@microconnect.net> wrote in message news:3B8FFB3D.641E0A3E@microconnect.net… – Hide quoted text — Show quoted text -> Hi Sandra, > These questions are for you. However, I would appreciate advice from > anyone who has any knowledge or experience regarding the National > Institutes of Health. Apparently, I may qualify for two separate > ongoing studies. One deals specifically with lupus, and requires > referral by a rheumatologist. For me, this is not going to happen. The > other study involves renal problems due to immune system dysfunction, > and that covers a lot of ground. Lupus nephritis is only one of the > kidney dysfunctions being studied. Alport Syndrome, my original > diagnosis, is being studied as well. This study requires no referral. > My questions: If I am admitted into one study, will I perhaps be able to > "back door" into the other? Also, does one have to pay for treatment > there? > Thanks. > Wes

Response:

BTW, NIH doesn’t just do experimentation on patients. They also help people with tough cases. My son basically has his own protocol which involves periodic testing to try to diagnose him, monitoring of his condition and treatment. He has never been experimented on. His doctors, however, I’m sure are getting lots of good information which will no doubt eventually end up published. Patients are given complete information on experimental treatments and/or procedures before they do anything. Again though, I think Wes would probably fall into the category of a tough case they’d probably try to help evaluate, diagnose and recommend treatment. All findings are forwarded to any physician you choose, so your doctor is kept informed of everything going on. Sandra

Response:

<<My questions: If I am admitted into one study, will I perhaps be able to "back door" into the other? Also, does one have to pay for treatment there?>> We have done this. My son is seen in ophthalmology. Because he probably has at the root of his condition some kind of as yet unknown generalized autoimmune disease, he’s also been referred to other departments. Normally, rheumatology prefers a referral from an outside rheumatologist; however, they did make an exception for my son and see him at the request of staff physicians at the original clinic. It seems to me that they can pretty much get whatever appointments they want. Whenever they’ve wanted my son to be evaluated for something, they get it done almost immediately. They’re also extremely thorough in their testing. Furthermore, I don’t think I’ve ever been anywhere that people were nicer. It’s just a great place. If you have the chance to go there and get evaluated, I would vote for taking it. They have more people there who have seen more things. They specialize in unusual and rare cases. They have the best testing and some of the latest treatments. They have doctors from all over the world, many the best in their fields. Every doctor we’ve ever spoken with there has also taken what we had to say very seriously. I just can’t recommend them highly enough. For out of town visitors, they do have some lodgings for family members of hospitalized patients, or patients who are being evaluated but are not needing hospitalization. If the lodge is full, they have connections with area hotels. I believe they provide reduced rates for family members and patients. I’m pretty sure about this but not positive since living close by we’ve never had to use this service. They’ll send you an entire packet of information though on airlines, hotels and such. Sandra

Response:

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Friend in Brazil requiring support, have questions about Lupus

Question:

Thanks for that Sandra, as it happens Janete has only got one kidney as she lost one as a result of a scorpion sting when she was a child. I will look into rheumatologist’s in the Curitiba area and possible funding for Janetes flight. Best regards Dunk On 29 Aug 2001 03:43:00 GMT, scroyle…@aol.com (SCroyle909) wrote: – Hide quoted text — Show quoted text ->Is the blood your friend is passing in her urine? If so, I’d wonder if her >kidneys are okay. >Sandra

Response:

Best wishes to your friend. It sounds like the most urgent thing is to get her in to see someone and get some lab work if possible to see if her kidneys are okay. If not, one of the cheapest treatments for lupus nephritis, one of the mainstays of treatment, is high doses of Prednisone. I wonder if this is the problem, and if she were to at least be put on Prednisone, if this would buy her enough time to make arrangements to perhaps come to the US for further treatment? Just a thought. Sandra

Response:

On Tue, 28 Aug 2001 18:14:45 GMT, dhar…@NOSPAM.hotmail.com (Duncan Hardie) wrote: >The story: >My Questions: >1. During my research I have found what I find a very strange >statement, that "African Americans and Asians are affected more often >than other races" see the bottom of: >http://thriveonline.oxygen.com/medical/library/article/000435.html >Why "African Americans" over Africans? Janete is, as it happens of >"African American" decent.

Perhaps simply because we don’t have enough data from African countries. Therefore it may only be accurate to compare African-Americans vs. all those of African descent. Don’t know anything about MSM other than James Coburn’s claims of it having helped his RA greatly. Hope someone else can offer more info. I have never tried it. I am leery of anything that includes sulfur-based chemicals. *********************************** KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’

Response:

Is the blood your friend is passing in her urine? If so, I’d wonder if her kidneys are okay. If she has kidney disease, her best bet for adequate treatment might be in the US if she can make it here. There are research facilities, such as NIH in Bethesda, MD, that offer free evaluation and treatment. We’ve frequently seen people at NIH from other countries. Their main interest in lupus though is kidney disease and only accept patients with a referral from a rheumatologist. Sandra

Response:

For friend in Brazil Msm can be harmful. It has sulfur or sulfate in it and thats not too easily tolerated by lupies. My son gave it to me and it made me worse that could be just me but I would be cautious. Have about 4 friends that live in Brazil and they come to U.S. twice a year for check-ups. So what do you do with someone who isn’t rich enough for that. Try to keep her out of the sun. Wear clothing from neck to toe use sun block and get as much rest as possible. You are right that stress is going to make it worse for her. In the meantime you are giving her love and support and that is just what she needs. Good luck Ruth In article <3b8bcd07.29778…@212.134.15.193>, dhar…@NOSPAM.hotmail.com – Hide quoted text — Show quoted text -(Duncan Hardie) wrote: > The story: > A friend of Cibele (my girlfriend) in Brazil called Janete has been > diagnosed with Lupus (not sure what form of the disease though). > Janete lives in a small farming community in Brazil near a city called > Curitiba, she and her family do not have a great deal of money and my > girlfriends family have been able to help her travel to Curitiba in > order to see a doctor. As yet we do not have much detail of her > condition, it seems that she has severe rashes on her body and her > hair has fallen out, for the past six months she has not been able to > walk and she passes blood. > Medical health care in Brazil is very expensive, unfortunately no > parties involved have enough money to provide Janete proper medial > care. Cibele and I are trying our up most to obtain as much > information as possible to assist with Janete’s situation. We are > looking for charity help and would be very great full if someone has > any suggestions/recommendations. > As the likely hood of proper medical care seems remote we are looking > for cost efficient ways to help. We are aware that before taking any > treatment a doctor must be consulted but we are afraid that this may > not be possible. Thus far I have recommended that Janete stays out of > the sun, unfortunately Jenete is allergic to cortisone. Janete is > being looked after in a relatively stress free environment now, which > seems to be a factor to her condition. > My Questions: > 1. During my research I have found what I find a very strange > statement, that "African Americans and Asians are affected more often > than other races" see the bottom of: > http://thriveonline.oxygen.com/medical/library/article/000435.html > Why "African Americans" over Africans? Janete is, as it happens of > "African American" decent. > 2. Also I know of the nutrient MSM (Methyl Sulfonyl Methane) as I once > had acute acne. When I took MSM it did elevate joint pain (a result > of the acne drug roaccutaine). I have read opposing postings on this > NG about effects of MSM on lupus sufferers. What is general consensus > of trying this treatment? Below is a positive article on the topic: > http://members.ozemail.com.au/~gowatson/msm1.html > Thanks in advance for any help > Dunk

Response:

The story: A friend of Cibele (my girlfriend) in Brazil called Janete has been diagnosed with Lupus (not sure what form of the disease though). Janete lives in a small farming community in Brazil near a city called Curitiba, she and her family do not have a great deal of money and my girlfriends family have been able to help her travel to Curitiba in order to see a doctor. As yet we do not have much detail of her condition, it seems that she has severe rashes on her body and her hair has fallen out, for the past six months she has not been able to walk and she passes blood. Medical health care in Brazil is very expensive, unfortunately no parties involved have enough money to provide Janete proper medial care. Cibele and I are trying our up most to obtain as much information as possible to assist with Janete’s situation. We are looking for charity help and would be very great full if someone has any suggestions/recommendations. As the likely hood of proper medical care seems remote we are looking for cost efficient ways to help. We are aware that before taking any treatment a doctor must be consulted but we are afraid that this may not be possible. Thus far I have recommended that Janete stays out of the sun, unfortunately Jenete is allergic to cortisone. Janete is being looked after in a relatively stress free environment now, which seems to be a factor to her condition. My Questions: 1. During my research I have found what I find a very strange statement, that "African Americans and Asians are affected more often than other races" see the bottom of: http://thriveonline.oxygen.com/medical/library/article/000435.html Why "African Americans" over Africans? Janete is, as it happens of "African American" decent. 2. Also I know of the nutrient MSM (Methyl Sulfonyl Methane) as I once had acute acne. When I took MSM it did elevate joint pain (a result of the acne drug roaccutaine). I have read opposing postings on this NG about effects of MSM on lupus sufferers. What is general consensus of trying this treatment? Below is a positive article on the topic: http://members.ozemail.com.au/~gowatson/msm1.html Thanks in advance for any help Dunk

Response:

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Doctors.

Question:

Hi Sandra, It is important to know if I have lupus. However, it is crucial for me to know if I have lupus nephritis. I really want to hang on to this kidney as long as I can. Dialysis is sometimes much tougher the second time around. I am only 44 years old, and I was told before that I would be lucky to see 50. I need to live longer than that for my kids. Wes – Hide quoted text — Show quoted text -SCroyle909 wrote: > Sounds like you’ve found quite a resource! On the other hand, I don’t blame > you for not wanting another biopsy. I hope that it doesn’t come to that. I > guess what it comes down to is: (1) How important is it to know for sure > whether or not you have lupus? (2) If it is very important to have this > information, will the proposed biopsy give you that answer? > Sandra

Response:

There’s a whole bunch of autoimmune vasculides which can cause kidney damage. Wegener’s granulomatosis, polyarteritis nodosa, Churg-Strauss (I think), etc. It’s not uncommon for someone with lupus to have a second autoimmune disease.. Maybe you should ask your physician about testing for those and similar?? — Bruce

Response:

Thank you Bruce. I will do that. By the way, are you a doctor? Wes – Hide quoted text — Show quoted text -Bruce wrote: > There’s a whole bunch of autoimmune vasculides which can cause kidney > damage. Wegener’s granulomatosis, polyarteritis nodosa, Churg-Strauss > (I think), etc. It’s not uncommon for someone with lupus to have a > second autoimmune disease.. > Maybe you should ask your physician about testing for those and > similar?? > — > Bruce

Response:

Nope.. not medically trained at all.. just a patient with 4 years of WG behind me. — Bruce

Response:

Sounds like you’ve found quite a resource! On the other hand, I don’t blame you for not wanting another biopsy. I hope that it doesn’t come to that. I guess what it comes down to is: (1) How important is it to know for sure whether or not you have lupus? (2) If it is very important to have this information, will the proposed biopsy give you that answer? Sandra

Response:

Hello Everyone, As I said in a previous post, I visited the kidneydisease site yesterday. Some interesting developments have occurred, other than being flamed. Two world renowned nephrologists are now discussing my problem. I must say that it is extremely nice of them to take the time to do this. There is absolutely nothing in it financially for them. They just want to help. They looked at the results of the biopsy that I posted here a few days ago, and they saw problems. The frustrating part is that while they saw the problems, they were skeptical of the lupus diagnosis because of the negative ANA result. That darned ANA is going to haunt me the rest of my days. They suggested to me that I ask my doctors to do immunofluorescence or electron microscopy on any remaining tissue from the previous biopsy, or get the same studies done from a new biopsy. That is the only way to know for sure if lupus has set in. Anyway, I e-mailed my transplant surgeon about their discussion, and he is suggesting the possibility of another biopsy, unless they can use samples from the previous biopsy to study under an electron microscope. So, things are moving, and I am grateful. My big worry, however, is that another biopsy is going to cause me to flare even more than I am at present. The last time, my blood pressure went way up following the procedure. It took hours to get it under control. I felt lousy for weeks, although I had no idea then what that was about. Wes

Response:

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