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Old 04-28-2007, 01:17 PM   #1
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Getting off Rebif

I have been on Avonex, then Rebif for 8 years +/-, yet I am slowly getting worse. I question maybe it is from the shots that are making me worse. Whwn I discuss with docs, they put the fear in you like the minute you are off shots, you will be in a wheel chair. I would like to hear from anyone who has gone off shots, after many years, & what their results were.
Thank you,

 
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Old 04-28-2007, 01:48 PM   #2
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Re: Getting off Rebif

Hi Luvs,

While I am not a dr, it sounds to me as though your MS is fairly aggressive in that you are having breakthrough disease activity even while on the strongest of the older generation DMDs (you said you're getting worse)... therefore going off Rebif might make you 'feel better' initially because you won't be experiencing the side effects of the interferon, but the fact still remains that you are having breakthrough disease activity with the very real possibility that you might have "silent lesions" forming while off therapy as MS is a progressive disease.

Have you discussed Tysabri as your DMD of choice with your neuro?

All the best dearheart,

Lauren

 
Old 04-28-2007, 08:28 PM   #3
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Re: Getting off Rebif

Please keep us posted on this, what you decide and how your disease progresses. Having been on Rebif just under a year, and having NOT had any real issues since being on it for 4 months- I dream about the day when I wont have to take these shots anymore! I think about stopping it, but wont- simply because it is doing what its supposed to do, for now.
Please know you are in my prayers, and I hope that you find relief in the near future. Tysabri is something you should investigate. Read the posts on it, and on Mitox....its doing amazing things for some....
hugs,
Nikki

 
Old 04-29-2007, 09:01 AM   #4
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Re: Getting off Rebif

switching medications may be the way to go, one does build a tolerance over time to these meds.

 
Old 04-29-2007, 12:33 PM   #5
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Re: Getting off Rebif

Actually, they dont build up a tolerance. In fact, I just had this exact conversation with my doctor and my pharmacist this week. They advise against switching from an Interferon A beta-1 to Betaseron. They also advise against switching from any other CRAB UNLESS IT IS WARRANTED, such as intolerance or, of course, any kind of allergic reaction. The meds themselves only improve as the level in your blood stream build up and it can take up to a year for Copaxone to reach full blood level, Rebif 6 months, and so on...


There are people who experience breakthrough symtoms, due to the progression of their disease, which is why CRABS are only approved for Remittant/ Relapsing MS, not Progressive. I myself, have Progresssive and am still on Rebif, simply becasue there is NO evidence that it cant continue to work, or slow down the progression of the disease; however, no one is promising me that I wont have relapses even though Im on it.

The drug is not to fault, the drug doesnt stop working..it either works for you, with your system or it doesnt..however, as the disease progresses, there are only so many options to look into. As Laren stated, some feel better getting off CRABS, if they had bad side effects or initally didnt tolerate it well. It took me 6 full months before I stopped having injection site reactions and flu like symtoms. Now, I can take it and forget it for another 2 days.
Tysabri is one which is so new, and so advanced, it may be the right drug of choice..it should definately be explored with your doctor.
Good luck.

 
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