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    Old 06-17-2008, 10:11 AM   #1
    maxmadd
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    Rebif question

    Hi everyone,
    Are getting new symptoms common while on Rebif? I know the medication is suppose to hopefully slow down the progression of MS but does anyone get new symptoms?
    Thanks, K

     
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    Old 06-17-2008, 12:47 PM   #2
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    Re: Rebif question

    Quote:
    Originally Posted by maxmadd View Post
    Hi everyone,
    Are getting new symptoms common while on Rebif? I know the medication is suppose to hopefully slow down the progression of MS but does anyone get new symptoms?
    Thanks, K
    Hi, I've been on Rebif for nearly a year now and I am still getting symptoms from the injections, fever and lack of sleep on the nights that I inject. I think you are probably talking about new MS symptoms however, to be honest in the last year I have had a variety, numb hands, optic neuritus, balance problems.... Some of them have been new but I have recently had optic neuritus and where it had previously effected my sight and been really painful, if has just been painful. Which is kind of lucky because the recent attack was in my left eye and previous attacks have been in my right eye. I have been considering whether the Rebif works, realising that it is only a short period of time, but concluded that Rebif was reducing the severity of attacks, hence the pain and no loss of sight. Trying to be optomistic I suppose. How long have you been taking Rebif and have you had new attacks? If you don't mind me asking?

     
    Old 06-17-2008, 12:47 PM   #3
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    Re: Rebif question

    Rebif is just like any of the other interferons. What works for one person may not work for another. If you are having new symptoms (on Rebif or not!) you should immediately contact your neurologist because you may be having an acute flare up. Just because these drugs are "supposed" to slow down the disease and prevent acute attacks does not mean that they do this always, 100% of the time with every patient. It is possible to still get attacks when on Rebif or any of the other drugs. If you get enough attacks or exascerbations of symptoms while on the drug, it may not be the best choice for you. For example, I was on Avonex for a little over a year when I was first diagnosed. In 8 months I had two bouts of Optic Neuritis and started to lose the feeling in my left hand and the left side of my face. I was in the hospital once and was treated with Prednisone twice. I got off of the Avonex and went on Rebif and have been doing much, much better ever since. I don't want to jinx myself but I haven't had a new lesion on my MRI since getting off of the Avonex. You sometimes have to go through a period of trial and error until you find the right drug. Some people tell me that Avonex works great for them and Rebif was awful. For me it was the other way around. Some people swear by Copaxone and others love Betaseron. If you think you are having new symptoms while on the Rebif, it is entirely possible. Unfortunately, it's not a cure.

     
    Old 06-17-2008, 01:56 PM   #4
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    Re: Rebif question

    Quote:
    Originally Posted by purple2067 View Post
    Rebif is just like any of the other interferons. What works for one person may not work for another. If you are having new symptoms (on Rebif or not!) you should immediately contact your neurologist because you may be having an acute flare up. Just because these drugs are "supposed" to slow down the disease and prevent acute attacks does not mean that they do this always, 100% of the time with every patient. It is possible to still get attacks when on Rebif or any of the other drugs. If you get enough attacks or exascerbations of symptoms while on the drug, it may not be the best choice for you. For example, I was on Avonex for a little over a year when I was first diagnosed. In 8 months I had two bouts of Optic Neuritis and started to lose the feeling in my left hand and the left side of my face. I was in the hospital once and was treated with Prednisone twice. I got off of the Avonex and went on Rebif and have been doing much, much better ever since. I don't want to jinx myself but I haven't had a new lesion on my MRI since getting off of the Avonex. You sometimes have to go through a period of trial and error until you find the right drug. Some people tell me that Avonex works great for them and Rebif was awful. For me it was the other way around. Some people swear by Copaxone and others love Betaseron. If you think you are having new symptoms while on the Rebif, it is entirely possible. Unfortunately, it's not a cure.
    There is alot of truth to this, but one thing should be pointed out. Rebif and Avonex are exactly the same drug..identical in every way except that Rebif is given more often and is given subcutaneously, vs. intramuscular...because it is given more often, Rebif often is considered stronger, and more aggressive- for some patients, this is needed...
    The other thing which should be pointed out is that with ANY interferon- it takes approximately 6 months from the time you hit full dosage (with Rebif, 44 mcgs, usually into your 7th month of injections) before you start having positive results...it takes that long to build up in your blood stream and really show a difference...however, it is true, that if you have been on any drug that long and are still having excaberations regularly, that choice of drug might not be best for you...

    However, like it was also pointed out, even being on the "right" drug, you are still going to have symtoms..none of them are designed to really eliminate them entirely, but they should help prevent total relapses to a certain degree, and keep your symtoms alittle calmer...Ive been on Rebif for almost 2 years, I still have new symtoms now and then, and the original ones which I was dx with, will never go away, nor have they lessened; however, I havent had a real relapse in the past 12 months nor have I had any new activity on my MRIs..in my opinion (and my docs) this is optimal and the best we can hope for!

    Good luck...talk to your doc and maybe an MRI is needed to identify if the drug is working the way it should be..
    Nikki
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    Old 06-17-2008, 03:25 PM   #5
    maxmadd
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    Re: Rebif question

    Hi, Thanks for everyones input. I have only been on Rebif for 2 months. I kind of figured it was early and getting some new symptoms was probably normal. I am not going to jump the gun just yet. I have had very little side effects and my liver functions are normal. I will just continue on and time and my next MRI will tell. Thanks everyone. This board if so helpful.
    K

     
    Old 06-17-2008, 04:12 PM   #6
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    Re: Rebif question

    Hi k. Your right, you really havent been on it long enough...my first few months, actually, into month 4- I had a major relapse. Was positive it wasnt working for me, and that the doctor was going to take me off of it..but at month 7, I had that MRI, which showed no changes (which is good) and I have over 50 lesions to begin with! I also had blood work every 3 months for the first year, and that was normal, too...
    At month 4, I stopped having any side effects (you still might get them, being only in month 2-- youve only just begun the full dosage, however not having had any at this point is a really good sign) but at that point, after my one big relapse, Ive never had another one..at this stage, everything is new to you. Youll start noticing patterns and trends and know when things just arent right.
    Good luck to you with the Rebif experience- I hope its as positive for you, as it has been for me...
    Nikki
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