Rebif and Paralysis worries!!

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Rebif and Paralysis worries!!

Postby bindsanator » Mon Apr 18, 2011 6:02 pm

Hi everyone,

Hope everyone is doing well, happy and healthy. I have a major concern about Rebif drug and what it sometimes does to me; is really worrisome! I started the drug at the start of this January and have been on the low dose ever since. It went OK at first but then one morning I woke up and couldn’t walk. It went away by midday. Then it happened again a few weeks later and worse this time and it went away later same day.

At the end of March this year, I woke up and my legs were totally paralyzed and I could do nothing!! I fell out of bed, tried to make it to the loo but couldn’t, fell backward into the dresser, scratched the hell out of my back, literally crawled to the kitchen to get some juice and crawled back to bed. A nasty affair, so the nurse took the dose down to ¼ of the dose (11 iu). I took that on the Tuesday and it was fine but then again on Thursday. Come Friday, I felt like I was walking funnier than normal, only to awake on Saturday to paralysis again!!! A couple days later of sleeping most of the day, I am back to normal but it took altogether too long!

Speaking with the nurse today, she advised taking the 11 dose down to 4.4 and see if I can deal with that; either that level and build it up or cease using Rebif altogether. I need to ask if there is any chance that this paralysis will stay. She gave me lots of talk about how “the Rebif flu-like symptoms raises your body temperature (which never happened to me)” and this was obviously an MS symptom (this which I have never had) and blah blah blah it cant possibly be the fault of the drug… “ I remain unconvinced.

Currently, I am not working so these days of paralysis haven’t gotten me fired yet, but I want to be working soon and this cannot continue! It is hard enough for me to find work so the last thing I really want to do is find something and then lose it b/c of MS…

So this is the situation as it stands. What do I do? Do I stay on it, chance going without DMDs or try a different one? I am very reluctant to try the one that permanently pits your skin, I believe it is intramuscular, as I hate needles (I have a Rebismart machine so I don’t see it) and one of the features I have always prided myself on is my skin so I do not want to mess that up permanently! Perhaps that is vain to worry about that, but MS leaves you with so little of which to be proud that I think it is fair to hold on to what you can!

Any advice would be greatly appreciated!! Thanks very much for anything that you can come up with.
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Postby Bubba » Mon Apr 18, 2011 6:52 pm

I have never heard of those side effects from Rebif. My guess is that it is the MS. I know several people who have been on Rebif for years, 2 years myself; and nothing like that from the drug????
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The problem comes with the decision of weighing the unknown with the unknown.
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Postby Wonderfulworld » Tue Apr 19, 2011 1:28 pm

Bindsanator that sounds like MS, not rebif. I had paralysis, sudden onset, with MS. Another MS'er friend who has never taken any DMD's has had a few bouts of her leg just freezing, then it resolving quickly.

I know you're saying you don't want to take anything that harms your skin (neither did I but rock and a hard place and all that!) but I suppose you have to weigh up levels of risk and benefit. I 'failed' on Rebif - MS got worse - but have done really well on Copaxone with no loss of mobility but with other non-visible symptoms and relapses. My legs have lipoatrophy (Copaxone is subcutaneous- like Rebif, and I did develop 2 small patches of lipo on Rebif) , they look awful - but I can walk as far as I want, go for a cycle sometimes even.

Did you contact your neuro when the paralysis happened?
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Concussus Resurgo
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RR-MS dx 1998 and Coeliac dx 2003
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Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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