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Old 12-07-2010, 07:43 PM
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Riverwild Riverwild is offline
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Join Date: May 2007
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Riverwild Riverwild is offline
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Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
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Quote:
Originally Posted by clarkstar View Post
Thanks! my only problem is that they never even spoke to me about the program, jsut said they wanted to start me on it. i was disappointed i am still waiting on any treatment besides gabapentin. i'm worried i wont get any better (i currently use a walker but can walk without it through the house- sometimes). i got an "infusion blanket" in the mail the other day but other than that havent heard anything. someone from the clinic called me on thursday, but only asked me to call, then didnt answer or return my call...................... frustrating!
Your doctor should have explained it to you in detail, but I guess some docs just don't do that. It's not right that a doctor would expect you to just take what they tell you to without explanation! Ask questions and take notes when you go to your doc. Call if you need more information. You pay them and they should give you the service you need. Be proactive!

The clinic or infusion center should have returned your call, but I am willing to bet that they called you to schedule you for infusion and that the process is further ahead than you think. Call them back if they haven't called you back. Be proactive.

As for Biogen (the pharma that distributes Tysabri) they should have contacted you by now with the name of your case worker (or whatever they call it now).

When I was waiting to start, they called after a month and gave me the old "welcome to Tysabri" speech and I lost it, because they were supposed to investigate costs for me, give me the start date after my infusion center had been trained, etc and I hadn't heard from them at all. They didn't have it together way back at the start. I hadn't been scheduled, hadn't found out what the cost would be, etc etc etc. but that was long ago, after Tysabri restarted and they had to get their program in place.

What you need to know is that all they do now is ensure the infusion center is trained and approved, make sure that you are registered and make sure the drug is there for you. and I bet that is already done, since the infusion center more than likely has patients already on Tysabri.

My advice is to go to www.Tysabri.com and register. There's a lot of info available there for new patients that may answer questions you may have. There's a good support system in place there now. Some people don't need it after awhile and some do and it is there if you need it.

One thing you said struck me. You are afraid you won't get any better. What are your expectations with this drug? It's important to understand that Tysabri is not a cure. It's designed to slow the progression of the disease and reduce the frequency of relapses. It doesn't cure you. You will still have MS and anything else you get out of it besides what it is designed to do is gravy.

Some folks have amazing results. Some folks just stabilize. In my case, the disease process has stabilized and I have seen improvement. I still have some spasticity and I still have fatigue but I treat those symptoms with other medications and I can live with that. My primary symptoms were vision and cognitive stuff and the problems that go along with that, and those are back to pre-diagnosis levels, but I would have been happy just having the serial relapses stop. I was having relapses every three months or so and my MRIs went from 4 lesions to "uncountable" in a very short period of time, and that has stopped too.

For some, it doesn't work at all, they develop antibodies and have to go off it. It's like the rest of the MS drugs, they either work for you or they don't, and you try something else.

Let us know how it goes for you!
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


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I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
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Negative for JC virus antibodies!
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I'm doing alright and making good grades,
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