Quote:
Originally Posted by daisy.girl
I have yet another question....Tysabri is so new to me. I have only had 2 infusions, one on Feb 7th and my second on March 9th.
Yesterday, I began itching randoming all over my body (not severely), head, neck, legs, etc...and this morning, I am beginning to get a cold sore on my upper lip.
Has it been too long since my infusion to have a reaction? Would this be a reason to stop Tysabri?
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Is it possible that it is nerves or an allergic reaction to something else that is causing this?
I would be concerned if it happened during infusion or within 48 hours of infusion. None of it sounds like a reaction to Tysabri since it's been a few weeks since your infusion, but the best person to ask would be your physician.
I questioned myself about every little twitch when I started Tysabri, but decided that it was probably because I had heard too much testimony about the concerns and fears about what might happen with Tysabri, since it was so new and not a lot of people understood how it worked. I resolved to relax, sit back and just be aware of what was happening and write it down and then when I read over what I had written a few days later I would realize that it had passed without a problem. The things that did not pass were reported to my doctor and we dealt with them at my regular appointment every three months.
I hope things get better for you. Tysabri is not for everyone and some people cannot tolerate it as well as others. It doesn't mean you are a failure, it just means it didn't work for you.
Some of us couldn't take the interferons, some of us couldn't take copaxone, some have bad reactions to steroids, and for some, none of the meds that were available worked for them. We are lucky to have choices now, because less than 25 years ago there were no drugs to choose from, just drugs to try and treat the symptoms. Now we have the ABCRs and Gilenia and more coming out soon. Scientists are working on stem cell treatments and investigating venous insufficiency and other things, identifying the genes that appear to relate to MS and tying in what they have learned while working on other diseases that may help people with MS.
I still believe that there will be an understanding about the whats and whys of MS in my lifetime, as well as a way to stop it.