I would like to hear how people are doing on Rebif.

A board to discuss the Multiple Sclerosis modifying drug Rebif

How are you doing on Rebif?

Much better
8
17%
A Little better
11
24%
Same
8
17%
A little worse
5
11%
Much worse
2
4%
Too soon to tell
12
26%
 
Total votes : 46

Postby carolsue » Tue Nov 30, 2004 2:14 pm

I would like to change my vote from "too soon to tell" to "MUCH BETTER"!

Dx April 2004 after two attacks--one in January and another in April (I know, I'm lucky the dx was so straightforward and quick). I've been on Rebif since May 2004. All symptoms have subsided 100% and I've had no new relapses since. My MRI last week showed NO new lesions and no activity! :D
and my low platelets and high liver enzymes have started to bounce back toward more normal ranges.

so I will stay the course--esp. since the new thinner needles make it a bit more bearable.
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Avonex

Postby RONO » Wed Jan 05, 2005 1:18 pm

I have been on Avonex for 5 years, no signifcant excaserbations.
Going for an MRI on Friday, my first in 5 years since MS diagnosis.
Hate MRI's, but I am in this for the long term,
Doc is considering a switch to rebiff[/quote]
RONO
 

Postby rozo822 » Tue Jan 11, 2005 5:22 pm

My 22 year old daughter was just diagnosed over Christmas break. Last night she took her third injection. So far she has had no side effects but the dose is still low. It increases gradually. Hopefully she will continue with this success.
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Postby stsolakos » Sun Jan 23, 2005 1:52 am

Hi all.

I 've been diagnosed in February 2001, after a serious attack which, fortunately, left no permanent symptoms, except a tolerant tingling in some of my left hand fingers. I 've been on Rebif since March 2001, and started the 44mcg dose in January 2002. I was doing very well (no attacks, no progression in MRI, no worsening of symptoms) until this summer when started feeling a little worse (both because MS and Rebif) and the side effects got intolerable. I have fever the whole next day, which is enough to make me want to stay in bed.
My neuro said that my body has developed antibodies and reacts strongly against interferon. It seems that Rebif can do nothing for me, anymore.
Anyway, Rebif is good for some people for a couple of years, provided you can tolerate the long-long list of its side effects. I have to admit that the new needles and injector are much better than the old ones, so, for the new user, it will not be such a pain.

Be all well,
Stavros
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Postby Jason » Sun Nov 20, 2005 7:32 pm

I have been on Rebif now for 2 months. I have seen a slight improvement but people who have not seen me since I started tell me I look better (color). I hope the side-effects will subside the fatigue is really a pain.
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Postby jgkarob » Sat Apr 22, 2006 5:38 am

Hi there,
I've been on Rebif 44 since December 2000 and have done really well on it.
I did get some raised liver enzymes in 2001 and had to reduce the dose for a year but went back on to 44 in 2002.
I have never had the side effects, though of course I get the red injection site marks. I just rotate on my arms and stomach as injecting into the buttock just made me clench up too much!
I don't use the autoinjectors as I like to be in control of the speed of the injection as it hurts like hell if you hit the wrong spot.
I feel very lucky that it has worked so well for me. At the time it was the only DMD on offer and I was very ill and could only shuffle around slowly and was incontinent. It took 3 or 4 months to reverse all the damage and for me to get the time and space to heal and get fit again.
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rebif

Postby bromley » Sun Apr 23, 2006 5:41 am

mrsenstitz,

Glad to hear you are doing well on Rebif. I started some two months ago and on reflection am a little better in terms of some of the feeling coming back (my symptoms are sensory - mainly reduced feeling in feet and knees).

Your approach to injecting is the reverse of mine - I use the auto-injector all the time as I find it so easy. I find injecting into the backside to be very easy - the arms are a no-no. I see that Serono is seeking approval for a revised formula which is easy to take, but I haven't really felt any of the side effects.

Ian
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Postby jgkarob » Sun Apr 23, 2006 5:58 am

Hi there Ian,
How long have you had MS?

I think I must have been pretty benign for about 8 years after a first really bad episode (1993ish). No one could figure out what was making me so ill- or so I thought, but looking back on the symptoms someone must have put two and two together but they weren't going to let me know.
Mine was triggered by physical stress, operations and immune reactions and only lately by emotional stress.
I find that rather curiously, any stress makes my legs go completely numb from the knee downwards. This wears off, but is a useful weapon against the person causing the problem!

I'm glad that the Rebif is having some postive relief for you. It takes a few months to really kick in, but the main benefit is slowing that damned relapse rate. I still keep on expecting it to cease working but so far it seems to be fine. I don't know the longest time that anyone has taken it for, but since you seem to be a man who likes research (rather like Raven/Robin who I know from other boards) you will probably know the answer.
Best wishes,
Norma
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Had to stop Rebif

Postby Jason » Tue Jul 04, 2006 7:10 am

After starting back in September and increasing up to 44ug the side effects started after 6 weeks and really increased by Christmas, the dosage was reduced to 22ug in January and some of the side effects subsided. My walking got worse mainly due to increased fatigue.
I talked to over 10 people using Rebif and only 1 had to stop, the others are doing fine, one was even golfing again.
Due to stopping Rebif, after consulting with my Neurologists, I am about to start on Imuran with Prednisone.
Since quitting many people have asked me what I am doing differently because I look better, funny they said that when I started as well.
Please keep in mind that my experience and that of the other person who had to quit is not common.

On the bright side I collected enough Reward Points to get a Digital SLR, have to always look for the positive side.

Jason
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Postby missvicki » Sun May 20, 2007 11:20 pm

I have been on Rebif for a little over 2 years and have had no relapses during this time period! Several different symptoms still come and go, but I think they are even getting a little better. :)
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me and rebif

Postby paul2007 » Sun May 27, 2007 8:56 am

did well the first year and a half with no attacks but now having one or two a year again which is disappointing and now requiring the odd dose of steroids again. tested negative for NABs. the most severe attacks eg disabling vertigo and total loss of balance/coordination have not recurred so I suppose I am getting some benefit but it's just not stopping the attacks now eg numbness and leg/weakness.
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Postby EyeDoc » Tue May 29, 2007 11:39 am

I started Rebif 2 months ago after having used Avonex for almost three years. Compared to Avonex, the Rebif injections are a piece of cake! The needle is so much smaller, and the auto-injector makes the process simple. I don't like injecting under my arms though.
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Postby carolsue » Tue May 29, 2007 12:22 pm

I no longer inject the back of my arms as there just isn't enough fat there, and I rarely inject the top of my thighs due to very long lasting rebif splotches/bruises. I primarily use the buttocks and abdomen. You'll find your rotation--good luck!
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Postby EyeDoc » Tue May 29, 2007 12:42 pm

carolsue wrote:I no longer inject the back of my arms as there just isn't enough fat there, and I rarely inject the top of my thighs due to very long lasting rebif splotches/bruises. I primarily use the buttocks and abdomen. You'll find your rotation--good luck!


I am fortunate so far in that I don't get noticeable red splotches at the site of injection. Hopefully this will not change. The nurse that came to my house to teach the injections said I "had" to rotate all 8 sites of injection. I would love to stop the arms. Has anyone had problems with injection just 4-6 sites?
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Postby bethanylynn » Wed May 30, 2007 10:33 am

I've been on rebif since march after dx in feb. I know that the neuro said i'd feel worse before I felt better, but this is the pits!!!! I never know if I feel crappy because of the MS or the rebif, but i know I' NEVER felt as bad as I have these past 3 months. Fatigue, muscle ache, straight up PAIN in my legs & feet-- most of the time I feel as though I'm underwater with LOTS of resistance working against my legs. I never felt anything even close before the rebif.
I'm glad I have the injector since my fine motor is gone. I can't inject without it BUT the darn thing is SO stiff and new that, when my husband isn't home, I have to hold it and my 8 year old has to push the button. I stick mostly to my legs & butt. The arms have been done on the rare occasion and I've never EVER even considered my abdomen.
I have an appt w/ the MS center at Johns Hopkins next month so who knows what changes will be coming down the pike....
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