Feel like crap on Rebif

[heathercarr05]

Hi

I was wondering if anyone takes a lower dose of Rebif regularly? I have been on for 6 months and am tired and achy all the time. My feet tingle and my back and arm itch. I was off of medication for a week at the begining of the year due to new deductable and felt great all week. Started injections again and feel terrible again. Going to see doctor in about a week and was just looking for alternatives. Your input is appreciated.

[jessiesmom]

Your Rebif Experience

Hi Heather,

I am sorry that you are having such a hard time with Rebif. I have been taking it since my diagnosis about 6 years ago. For most of that time I have been on the full 44mcg dose. For about 6 months when I was being treated for another major illness (non-MS related) I was on the 22mcg dose. I have always been very fortunate to have minimal side effects at either 8mcg, 22mcg or 44mcg. I know not everyone is so fortunate.

If you were only off Rebif for a week you really should not have particularly severe side effects in my humble opinion. My Rebif nurse has told me that the drug stays in your system for 30 days before it is totally gone. Missing a week (3 doses) shouldn't be too terrible. That being said, you might want to talk to your neuro about switching to Copaxone - which is not an interferon drug. Many people on this board have had to switch drugs for various reasons. You just have to find out what works for you.

Good luck.

[roo613]

I, too, felt terrible on Rebif (not as bad as Avonex). I learned to just deal with it and accept it as my new life. Then at the 3 month mark, they ran my liver profile, and my numbers were so through the roof that they pulled me off of it immediately. It took about a month for me to feel better and a total of 3 months to get all of my numbers back to normal.

My liver enzymes were abnormally high even for a normal "you're liver isn't procesing this med" reaction. I think that explains my 3 months of misery.

Needless to say, they don't even want me to try the lower dose. Now, I am trying Copaxone after a year and a half of freedom from meds...

[heathercarr05]

Itching

Hi

Thanks for the reply, I have done some research on copaxone, and it sounds like the side effects of that are terrible also. I will do some more research and talk to my Neuro. Thanks again.

Heather

[Cat Mom]

I took Rebif for less than 2 years and those flu-like symptoms never disappeared for me; plus it didn't work so I was soooooo happy to switch to Copaxone.

While on Rebif, I felt like garbage most days and different levels of garbage the day after the shot. I had to plan everything around that darned shot. I took it at night and never once slept through the side effects, the Costco-sized bottle of Advil lived on my night table. I can honestly say that personally, the side effects of the Rebif were worse than my MS symptoms.

Since starting Copax in Aug 2007 I have only had 2 flares that required steroid IV. There are no flu-like symptoms, no headache/body ache, just a little bit of sting at the injection site that disappears quickly with ice and Benadryl cream.

I hope that whatever med you choose works as successfully for you as Copaxone has with me.