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www.IGliving.com and Rituxan

Barney Message
9 Oct 2013, 01:34 PM

Hello group, Just got my monthly subscription to IG Living. Do others get this magazine? It is for people that are getting IVIG due to immune diseases. I find there are some helpful articles in this magazine. Check out their website if you are interested. This month there is an article about using rituximab(Rituxan) for Autoimmune diseases. I found it interesting as my current doctor was very impressed with this drug when I first met him a few years ago and was thinking we should try it on my SCLS. I believe he ran it by Dr. Druey. Not sure on the response he got, but we have not tried it. Have any of you had discussions about Rituxan? While almost all of us are having success with IVIG, there are some that still have some symptoms....maybe an option? While I am so thankful to have IVIG and the results it is providing...the thought of potentially not having to go in for monthly infusions is enticing. Any insight out there on Rituxan?
aporzeca Message
9 Oct 2013, 02:39 PM

Many thanks for bringing the IG Living magazine and website to our attention! I didn't know it existed. I see that it is sponsored by FFF Enterprises, "the leading U.S. supplier of critical-care biopharmaceuticals, plasma products (including albumin, intravenous immune globulin and coagulation products) and vaccines." (It's always good to know who is behind what.) With regard to your question, let me hasten to make it clear that *the typical SCLS patient has the normal supply of immunoglobulins* floating in his/her blood. Specifically, it has NOT been scientifically alleged -- never mind proven -- that SCLS patients have a deficiency of immunities. And as far as is known, SCLS is NOT an auto-immune disease. It is suspected that IVIG works on SCLS patients because it provides some other benefit alongside the extra immunities -- possibly in terms of helping to preserve the integrity of capillary cells. Its well-known anti-inflammatory benefits may have the most to do with IVIG preventing episodes of SCLS. IVIG has "anticytokine properties," namely, it tends to keep certain regulators produced throughout the body (cytokines) behaving normally. The over-production of cytokines has been known to trigger various disorders, and the temporary separation of capillary cells may just be one of them. This is why other medications for immune and auto-immune diseases may not do the trick.
claude53 Message
9 Oct 2013, 03:50 PM

Hello Arturo, Hello Barney, I fully agree with Arturo's comments on SCLS. Rituxan® is a genetically engineered monoclonal antibody directed against the CD20 antigen present on B-cell of non-hodgkin’s lymphomas and chronic lymphocytic leukemia. It is also effective against rheumatoid arthritis and few other auto-immune diseases in combination with other drugs. Severe adverse reactions are not rare including allergic reactions, infections, etc…The pathophysiology of SCLS is not yet clearly understood. And even if one day the SCLS would be considered an autoimmune disease, it is not certain that Rituxan would be effective. A scientifically valid research on Rituxan-treatment against SCLS would be difficult because of the small number of cases of SCLS. Claude Pfefferlé, Switzerland.
Barney Message
9 Oct 2013, 05:01 PM

Arturo and Claude, Thanks for your prompt and educated responses. Great to hear from both of you. To a lay-person, though, it is hard to get my head around the fact that IVIG is primarily used(at least I think it is) for Auto-immune conditions...and it works extremely well for those of us diagnosed with SCLS, yet SCLS may not be an Auto-immune disease. While we may have plenty of immunities, they sure don't seem to act the way they are supposed to! Thanks again for your information.