Multiple Sclerosis (MS) Support Group

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cloudsintheysky 08/09/2013

Hi all,

I just started taking Rebif about a month ago. I am on the 50% dose now. The side affects have been strong at times. Sometimes I have a heaviness in my chest and/or a lot of pain. And now, I feel like a relapse I starting with numbness in various parts of my right side. Is this normal? Any advice? How has your experience on Rebif been?

Your help is much appreciated.

malinaC505 08/10/2013

i stopped taking rebif in april, and am in the middle of a relapse now, i didn't really get the side effects, i just kind of fell off the wagon and quit taking it, really wish i didnt though.

i'd definitely talk to your dr or call one of the rebif nurses and you can talk to them about your concerns, i really wish i did that instead of quitting.

id stay on it, even if its just half a dose, hope it gets better though!

cloudsintheysky 08/10/2013

Thank you Malina for the encouragement! I hope your relapse clears up soon. And maybe you can get back on Rebif soon.

wisconsinteacher 08/11/2013

I found the stress from the side effects of the Rebif did irritate my MS symptoms at times and I worried sometimes if it was making things worse. The more I adjusted to the Rebif, the less irritations I had over time. The symptoms weren't long lasting though......vision problem for a day or two, numbness/tingling for a few days, weak leg for a couple days, heavy chest feeling at times, too. I did have a numb feeling on the top of my foot that lasted a good month or so and my doctor became a little concerned, but it too, passed.

My MS symptoms have lightened over time as well as the side effects, but I have been on Rebif for almost seven years. I noticed the most side effects and MS symptoms in the first two years, the worst for both being the first 6 months. On occasion now, I have a bad side effect day where I feel the tired, flu like symptoms(I take Ibuprofen). Neurologist reported others say the same thing. Some days, very little side effects, other days, more so. Also, some days I barely feel the injection, other days it hurts. Keep checking in with the neurologist and with MS Lifelines. As I spoke with different nurses at Lifelines, I'd keep track of the ones I preferred.

To optimize my results, I take vitamins(especially D-3, not much sun in Wisconsin), I also take fish oil, and Acetyl L-Carnitine for energy production, memory, and cognitive function. I've tried some gluten free, too. I keep trying things and finding what works to help me manage more normally and hopefully minimize the MS.

cloudsintheysky 08/11/2013

Thank you Wisonsin. Your experience and insight are really helpful. It sounds as if you find Rebif helpful overall. Thank you for letting me know! :)

deleted_user 08/13/2013

I have been on Rebif since diagnosis 2 years ago. I'm happy with it. Have had no relapses and have minimal side effects such as the red bruising at injection site. I would encourage you to keep fighting through this tough period but stay in touch with your doctor too. After a year, you'll be able to see whether or not there are results with your Rebif. Who knows at this point, it could be saving you from having a much bigger relapse or symptoms than what you are having.

((HUGS)) and I wish you the best.

cloudsintheysky 08/14/2013

Thank you Smiling! I called one of the Rebif nurses and she said sometimes when people start Rebif, some of their older symptoms can become pronounced for awhile. She said to monitor how things go.
I start on full dose is a couple of days - so hoping all goes well.
Thanks for sharing your experience! It sounds promising!

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