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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | ||
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I am looking at switching over from IVIG to Rituxan (suggested by my doctor of course.) So I'm trying to wrap my brain around this. First of all I am in awe of all you warriors doing Rituxan! I looked back here to when I got diagnosed, just 3-4 years ago people were terrified of it and hardly anyone wanted to try it; only the worst of the worst were doing it. Now, it seems like LOTS of you are on Rituxan and getting great results!
I'd like to ask a couple of simple questions to try and get a feel for how this has been going for most of you: 1. Has the Rituxan helped you? If so, to what degree? 2. Did you have side effects? If so, what were they and how long did they last? 3. What was your treatment protocol / status when you started it? Had you failed every other treatment and were in dire straits, or did you try it because it was the best chance for getting better? I hope that makes sense. Previously only people who were at death's door seemed to get Rituxan, but lately it seems like more people are getting it just to reap the benefits before they are visiting the ICU like a revolving door. Thanks so much for helping me out! I'm just waiting on insurance approval. |
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#2 | ||
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Grand Magnate
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Tracy, You might want to contact Dr. Harper at Mayo Clinic in Rochester, MN. He has been doing a great deal of research on it and has experience with giving it to MG patients (he's a MG expert).
You don't have to be at death's door to get it anymore! It would help to have some input from someone such as Dr. Harper to know how to get it approved more easily. It certainly couldn't hurt to call his office! http://www.mayo.edu/research/faculty...d/bio-00078350 He has an email, too! Annie |
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#3 | ||
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Annie, thank you SO MUCH!!!
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"Thanks for this!" says: | AnnieB3 (01-06-2015) |
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#4 | ||
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Grand Magnate
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I hope he gives you hope.
![]() Do fully evaluate your cancer risk, however, as it relates to you and your family's history of it. Annie |
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"Thanks for this!" says: | Alberta Ron (01-12-2015) |
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#5 | ||
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He wrote back immediately and was very helpful!
Hmmm...I didn't know about the cancer risk. It runs rampant in my family. My first Rituxan infusion is two weeks from today. |
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"Thanks for this!" says: | AnnieB3 (01-15-2015) |
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#6 | ||
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Grand Magnate
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Any immunosuppressant comes with a cancer risk. And there's no crystal ball that can tell you if you'll be one of the ones who gets it!
I hope the infusion goes well!!! Annie |
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