Multiple Sclerosis (MS) Support Group

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ricanfemale30 01/02/2012

I went to the neuro today and told him that i feel like im slowing down.. i dont work/talk/eat/walk fast anymore..everything is slow espcially my brain! ha but anyway yes im out of my flare but theres underlying symptoms that stay with me like pain..weakness..cognitive issues..spasticity. etc.. he says im stable.. U TRYIN BEING IN THIS BODY!!! uugh..anyway he said next visit if i dont improve he will consider tysabri.. frankly i heard that crap kills people and its strong like chemo.. im not feelin the idea but i think hes runnin out of options i guess... i take gilenya..percocets n baclofen.. i weaned off of cymbalta and ativan cuz i hate pills n marijuana works better than those two pills combined! and then some!.. ssooo if im stable why switch me? im only on gilenya goin on 4 mths i was on avonex.. i guess the ques is.. anyone on tysabri? side effects?! how strong is this stuff? i freaked my bf out when i told him.. he doesnt understand but man does he try.. i love that man....i pledge to quit smoking and start a new diet regime soon when i have more money..whats ur deal doc?! which damn stage am i in already?!?!?!?

lchoppel 01/02/2012

On your questions about Tysabri, there is an excellent sub-group here with lots of vauable information:

http://www.dailystrength.org/groups/tysabri

deleted_user 01/02/2012

I will have been on Tysabri for 54 months come next week. They post a lot of warnings about the medication but there are tens of thousands who have used it and tens of thousands who are using it today. As for Gilenya they are already expanding the risks associated with its use.

I take Tysabri as an infusion every 4 weeks. On the day of my infusion I take it easy that day. In the beginning I was tired. I would watch TV and a nap. Now I just do what I want. I have not had any side effects from this treatment. I did have issues with Copaxon. Avonex was easy, no side effects.

When you speak with your Neuro be clear what he means by stable. He may feel that you are stable because you have not had an exacerbation in the last 12 months. But what is showing up on your MRI? Slowing down and cognitive issues reflect the disease is attacking your CNS. How rapidly these changes are occuring are also a sign the disease is active and not slowing down.

I hope this is helpful.

mjideas 01/02/2012

My observation is that Tysabri works really well for a lot of people. It came too late for me. The good thing now is that they have a blood test to test for the JC virus. Antibodies to that raises your risk of that scary PML. When it came out my doctor said it was the closet thing to a cure.

Even tho I'm avanced now the new neuro tested me and told me to think about it. Probably not for me. But the numbers and feedback I've seen for people with RRMS are pretty impressive. Do whatever you can to halt the permanent disability that comes with this disease while you have the chance.

Can't emphasize that enough.

Good luck

Melanie

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