Rebif experience

[berserko316]

Im 34 and was recently diagnosed with RRMS in december '09. I did my research and picked my medication and decided to go with Rebif. Now im starting to question my decision.

The diagnosis came after I had a relapse that lasted about 6 weeks with numbness to half my body and loss of sensory feeling as well. The symptoms started to go away before I started on Rebif and I havent had any major flare ups since I started Rebif in January.

However my problem appears to be the side effects and after reading several forums and doing research Im just not sure its worth it. Prior to my last incident I had about 3 other incidents over the past 2 years, so I have not had a long history with relapses which I am very thankful for. But now on this medication I find that I am extremely fatigued after for a day after taking the injection (M,W and F at 6pm) and almost always experience soreness and general pain. Tylenol usually helps but I particularly dont like taking Tylenol every day. I have skin irritation at the injection site that doesnt concern me as much. But the thing that really concerns me is my energy level and weight gain that I have experienced. When I was diagnosed I changed my diet (I have never ate healthier in my life) and excercise as often as I can (Not as much as I would like due to energy levels) but I quickly gained 20 lbs within 2 months and am having no luck dropping the weight. On top of that I can eat a bowl of soup for lunch and feel as though I gorged on a Thanksgiving dinner. I never felt so bloated and just miserable before taking the medication.

I am honestly curious if others have felt or experienced anything like this. I talked to my Neurologist and she chalked it up to the medication. Bloodwork has come back great each time and my legions have reduced and there are no new active ones. So despite that the medicine seems to be working, I question if the medicine is making me feel so miserable and if I should seek an alternative. Or if there is another underlying problem I am not aware of.

Thanks for any input shared, it is appreciated!

[Texas Lady]

I can only answer for my own experience with Rebif, as medications react differently with different people. I had very bad pain at first with Rebif, but gradually the side effects have either lessened or disappeared. I have been on Rebif for one year now, and the day after "hot flashes" have gone away. The fatigue has improved, but achiness is still there a little. I have been able to cut way down on the Tylenol, too. It took awhile, but it did get better. I have been actively losing weight and have dropped 20 pounds in the last year. Have you had your thyroid checked, by any chance? Just an idea. Sometimes the symptoms you are describing can be connected to thyroid issues.

[Lucia]

I've been on Rebif close to 8 years. The first year I had swollen, somewhat painful, red patchy sites where I injected.

But a combination of poor injection technique, improper storage (kept it too cold) and maybe the early formulation of Rebif probably caused all of that.

Starting in my 2nd year, it all got better. My injection technique improved. I'm a fanatic about keeping it properly stored, in and out of the fridge and I'm assuming that the changes in the formulation has made Rebif more generally tolerable.

Beyond the common flu like sxs, which one dose of Advil would take care of on injection day, I didn't experience the fatigue side effect at all.

However, maybe feeling a little more tired than usual was the fatigue side effect. Yet, it sure didn't stop me from exercising, working a full day, going shopping, going to the movies, dinner, etc.

Blood work has come back great each time and my legions have reduced and there are no new active ones. So despite that the medicine seems to be working....

I don't get it? If Rebif is doing what it should, which is to help prevent the creation of new lesion, then why stop it for side effects that can be managed, assuming Rebif is causing this at all.

You really don't know if the Rebif is causing the fatigue or weight gain. It could be something all together different like plain ole depression, something that wouldn't necessarily show up in blood work.

P.S. I don't want to leave you with the impression that Rebif hasn't caused any major side effect. The last two years I've developed hypothyroidism. Rebif is a strong contender here as the cause. Yet, the docs nor I want to take me off Rebif. I just take synthroid to manage the hypothyroidism.

The reason why I mentioned it was because it did effect my weight. I was eating my normal amount but in my case I was losing weight. However, I was also experiencing some major dental work, which definitely "put me off my feed".

So, as you can see, the obvious culprit may not be as obvious as you think.