Rebif users

[fishnbuddy]

I have been aware of my ms for about 30 years, constantly urged by doctors to get on one of the CRAB's the whole time but refused because it didn't seem right for me until a few years ago when one doctor said if I dont and my ms gets worse it will be too late to correct. Well it's been about 2 years now on Rebif and it seems my ms did get worse but not until I started doing the rebif.

Is it just a figment of my imagenation? Or has this happened to anyone else?

[Surfrgrl]

Not just you

Hey Fishnbuddy,

I was on Rebif for a little over a year following my first exacerbation in nearly a decade. Was told the same as you - get on a CRAB before it is too late.

About a month into treatment, my cognitive function began to decline, depression set in, I was so tired all the time that eventually I gave up on any physical activity, gained 40 lbs, my hair was falling out in clumps, and my balance was horrible. Not to mention the fact that the day after every shot brought on a tequila binge hang over. I was miserable. My quality of life sucked, and my marriage and friendships started to suffer. My kids started asking where their real mom was, because I obviously wasn't her. Oh, and I had to drop out of grad school because I couldn't do the work due to becoming suddenly stupid.

My neuro said all of the symptoms (cog fog, depression, balance, fatigue) were consistent with my MS, the hangover and other side effects would be the price I had to pay to stay walking upright, and that I should just get used to expecting less of myself.

Well, about 9 months ago I had enough, and against the advice of my neuro, I quit. Guess what? Within two weeks I started feeling better. And now? NO depression, NO cog fog, very little fatigue, I'm able to exercise on a regular basis, and most importantly my family and friends have me back. The weight has been very slow to come off, but that's thanks to a trashed thyroid (yay Rebif!) that I now have to take meds for. My reading comprehension has returned to normal, and I head back to school in the spring.

The decision whether to stay on a DMD or not is a very personal one, and I'm not saying you shouldn't, but I personally am so glad I stopped.

[pocoapoco]

Similar experience to Surfrgrl

I was on Rebif as well for about two years. I couldn't stand the fog and flu-like symptoms. So, I had already tried Avonex and Copaxone, none of those worked for me. Thank goodness there was one other option left for me and that was Tysabri. I still have problems walking. I use my walker all the time. But I don't give up. So if it doesn't work, move on and try something else. Keep a positive attitude and keep trying! Don't give up!

[roo613]

I was only on Rebif for 3 months, and while I thought I felt good, I had forgotten what good really feels like. Now that I have been off of it for 6 weeks, I feel GREAT. No fogginess, no exhuastion, no depression, no losing hair......All thing that I had come to accept as normal and good.

[MelissaQ]

Meds are definately not for everyone. And definately a choice which every individual needs to think about the pros and cons to taking a med vs not taking a med.

I, myself take Rebif and haven't had any problems and I feel great. I have only had one clinically diagnosed MS episode so until I have another, I am diagnosed clinically isolated syndrome right now.

I was very afraid to take the meds because I had read so many bad things about the interferons. I suspect that people tend to speak up more when they have had a bad experience.

If you are feeling pretty bad, and feel the Rebif is the culprit, could you try switching to Copaxone? There are some other side effects that you have to deal with on Copaxone and it's a daily shot instead of 3x's a week, but I don't think it's supposed to cause the side effects that some people experience on an interferon.

Definately contact your neuro, let them know how you are feeling. I wish you well and hope you start feeling better soon!!

[eam123]

Me, too.....

I started copaxone 4/08, I had up until then had pretty 'mild' MS. My symptoms were happening a little more frequently, though, so I followed my neuro's advice and started a crab. Up until then, my flare-ups were all like tingling, funny feelings. 3 months after starting meds I had the worse since the onset of my disease 12 years ago. She said I hadn't been on it long enough, and it could've been worse had I not been taking it. Now I have an exacerbation about every 8-10 months since starting meds, and am now on rebif, which I hate and my liver is not tolerating well. I think some of my good luck up until now was because I had two babies since dx, but I can't help but think all these meds are just firing me up. 1st mri in may since starting rebif......we'll see. I always did swank diet, which helped me, too.
Good luck in what you do, it's such a bugger disease.
Em

[KATHY SUE]

Is Rebif the problem?

I too look back at my journal and see that I have become worse since on Rebif. How do you really know what is causing the problems? It is truly a guessing game. I would love to quit Rebif, but don't know what will happen if I do. Scared to stop, but maybe it is the real culprit. Dr. probably won't approve like you say. I am thinking about it every day. These symptoms I have since starting Rebif are terrible. I hate it.

[Tomjadg]

I have been on Rebif for 6 months with a steady decline in my legs.
I will have MRI's and see the Neuro in two weeks, and I have decided I am going to tell him I am going off the meds for a month and see if there is any improvement.
My legs were much better before the meds.
If not, then I will start again with a new med. I have nothing to lose by trying this, and I would have to be off the meds for a month to change anyways.

[mfog023]

Like many have said already not every medication works for everyone. I have been on Rebif for 5 years and doing quite well thankfully. Had tried Copaxone and though it was better in reference to the lack of side effects it was not working to control symptoms and relapses. I have spoken with others who just seemed to do better without medications. Remember so little is now about this disease called MS. There are so many subgroups within MS that it is possible that those who don't have a positive response to the CRAB medications are one of those groups. My own MS does not follow the "normal course" but then there is no normal as you will find out in reading the responses of others.

Do what is right for your body. My neuro. respects my decisions as should all doctors. He looks at me in total when he makes suggests medications or any course of treatment.

[MSrocker27]

Starting

Just starting Rebif and suggestions on it?????

[mfog023]

I am happy on Rebif as I stated above. Making a decision was based on many factors. Prior to Rebif I had tried 2 other medications including Copaxone. The worst side effects I have had are injection site reactions and flu symptoms. Even after being on the medication for years every so often I will experience the flu like symptoms. I take it only prior to bed with 2 Advil and sometimes I have a hard time sleeping or simply wake up feeling the symptoms. It is rare and when I do have them I push through.

Each medication has drawbacks but the one that works is always the best.

[WACVet]

I have been on Rebif for 6 months with a steady decline in my legs.
I will have MRI's and see the Neuro in two weeks, and I have decided I am going to tell him I am going off the meds for a month and see if there is any improvement.
My legs were much better before the meds.
If not, then I will start again with a new med. I have nothing to lose by trying this, and I would have to be off the meds for a month to change anyways.

I find your post very interesting.... I was on Avonex for a little over a year, 10 years ago. I went into a decade of denial (was really good at lying to myself about the MS!), until the Neurologist showed me my MRI, kept clicking and pointing to more and more lesions (gee, makes lying to oneself a tad difficult with such reality smacking you in the face!). He insisted that I needed to face facts and start meds again. After a couple weeks of being in an exacerbation (I denied that also, a Nurse "friend" was the one to point it out to me), I decided to go on Rebif. Went through the titration period, started full dosage yesterday. Since starting Rebif, I've noticed the muscles in my thighs have become very "toned", making walking an effort. It's almost like wearing a pair of jeans that are way too tight in the thighs, without wearing pants! I get night sweats/chills the day/night of my shot, totally exhausted the next day, and my legs are wanting to give out on me.

I'm hoping this isn't a result of the Rebif, but your post is now making me wonder if it is........

[Tomjadg]

After my appointment next week, I'm going to stop the shots.
Email me in about 3-4 weeks, and I'll let you know what's happening. ******
I'm very interested to see if it helps.

I explain my legs now as walking on stilts through water.

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[KATHY SUE]

Walking on stilts, yes, that's it!!

I agree 100%, in water, with pain. I couldn't have said it better myself. Do you think the make up of the medicine (the blood part) is what's making us worse? You guys are giving me incentive to quite Rebif. I'm sick of it myself.

[Tomjadg]

I can only go by the research I have done, and know how I feel.
While taking the shots for the last 7 months, I have had no improvement, and a steady decline in my legs.
This tells me it is one of two things:
I have PP MS, in which case, the shots will not help, or the shots cause the worsening.

I have nothing to lose by stopping the shots for a month to see if that helps.
If my Neuro feels it is not PP next week, I will still stop the Rebif, then try another drug.

I'm lucky that I suffer no pain. I just walk like a drunken sailor and feel "buzzed" at times.