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PostPosted: Tue Mar 01, 2005 6:35 am 
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Location: dallas
My neuro has had me on CellCept, which suppresses the immune system, since August to help the Avonex which seems to not be enough as I keep having relapses and progressing disability. And now I've had one dose of Tysabri. Does the immunosuppressant increase the risk of problems with Tysabri (seems like the answer is yes) or with just Avonex alone? I've already asked and been allowed to stop the monthly pulse steroids she had also started me on because I didn't like the effect it was having on my facial skin. But when I mentionned stopping the CellCept months ago (after I became concerned after reading the warnings about lymphoma), she said she would find another immunosuppressant to add in its place. Is it risky, and if so, is it worth the risk? I'm currently scheduled to resume the CellCept 6 weeks after the Tysabri infusion date (CellCept had been stopped a week before the infusion).


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PostPosted: Tue Mar 01, 2005 8:55 am 
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batpere,

Just as an FYI. Remember, an "immunosuppressant" is totally different than an "immunomodulator". The interferons are immunomodulators.

The FDA tried to "swing" Tysabri into the immunomodulator class (which allows more freedom in prescribing, in more frequent doses, etc., with less safety warnings), but in reality, it acts as a suppressant.

You're fully justified in your "caution". This is not medical advice in any manner, but I would support the fact of you being careful while you are on CellCept. As you rightly note, Cellcept is an immunosuppressant.

http://www.chfpatients.com/tx/txcellcept.htm

Quote:
....I keep having relapses and progressing disability


batpere, has your neuro tried Novantrone yet? And I hate to say it, but your statement above indicates the possible narrowing of available drug options for you.

Talk more with your neuro. PLEASE make sure that "inflammation" is even still going on now due to your "apparent" type of MS. That's just my humble opinion, of course.

All the best.

Deb


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 Post subject: suppressive modulation?
PostPosted: Tue Mar 01, 2005 10:07 am 
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Deb,

I know, it's just semantics; however, an "immunosuppressant" is an "immunomodulator."

True, to modulate could (and should) mean to enhance, but doesn't anything foreign that alters a body system in essence suppressing something?

I read a post of yours about the necessity of an immunomodulator for the treatment of MS, I think you're talking about using a chemical agent to accomplish this: are you? In my simple mind given my more-than-adequate experience with the interferon beta-1a immunomodulator, I suspect that chemical-immunomodulation presents a health danger that medicine understands too little about. So little that, I think that medicine needs to abandon the idea that the best treatment for MS is to "modulate" the immune system with a chemical agent.

Every day more research is turning up showing how the certain foods, herbs, and dietary measures enhance and repair (modulate) immune function. How is modern medical research using this data for treatment options for immunodisorders like MS?

Too bad drug companies can't make a profit from dietary treatment options that have shown to repair and enhance. Who knows, maybe someday if the right folks get behind it.

Be Well,
Rev. Leonidas


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PostPosted: Tue Mar 01, 2005 10:21 am 
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Hi, Rev! How are you?

You know, I WAS really close to suggesting some "dietary" or supplementary alternatives, but then I stopped myself.

Yes, I'm talking about a chemical agent to assist in MS therapy. BUT, I narrow it down a little further by referring to "targetted" cytokine therapy for MS. Even though technically that is still connected to the "immune system", I break it down even farther. Affecting some cytokines without affecting others tend to create effects that aren't always even realized or affect the traditional "immune system" response as we generally think of it. So, speaking of semantics, do I believe that simply attempting to "modulate" the immune system is strictly the way to go? Nope!

Hard to explain, but in essence, I do agree with you, Rev. Remember, in another thread somewhere I said in my opinion..........everybody should LOAD up on anti-oxidants, etc. Eat right. I'm all for that and do that myself.

Sadly and unfortunately, though, in something as aggressive as MS can be in a lot of people, I'm afraid (solely in my opinion) that that won't do it all alone.

But..........I do agree with you, Rev!

Hey, as always, you be well also!!

Deb

EDIT: Oh, and Rev. You asked how is modern medicine using what you suggest? As I believe you and I, at least, can see........they aren't. Those are unfortunately separate divided "camps" at this present time, aren't they? :(


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