Rebif ?

[garrysgirl]

I started Rebif in August. I'm noticing that after my injections my legs go crazy with tingling. I've also developed pain in my fingertips and toes. Is this normal?

I'm worried because I lost my medical insurance and can't go to the doctor to be checked out. I'm getting my shots through the MS soceity but don't know if it's doing more harm than good at this point. I'm wondering if I shouldnt stop the medicine and let someone else benefit.

[CocoH]

Well, those things aren't listed as side effects but I've learned that that doesn't mean much. Hard to say if what you're experiencing is "normal" as it does seem that our bodies have vast differences in how they react to these drugs. I had some extreme (& not listed) symptoms when I first started Rebif in June. However, they did go away after a couple of weeks. I still have some mild "normal/listed" side effects but not the extreme "weird" ones. To me, if you're still having those side effects, it's concerning. My sister-in-law just started REbif & she's having extreme back pain & nausea.
Have you called MS Lifelines? If not, I would suggest it. Their number is 877-447-3243.

[garrysgirl]

Thank you Coco

Thanks for the reply. It just doesn't seem to me that the shots are helping. I figured I've given my body plenty of time to adjust and I still feel terrible from the side effects. I guess I'm sick and tired of being sick and tired. At least I'm unemployed right now which turns out to be a good thing I guess. There's no way I could work all the hours I did before feeling like this.

[CocoH]

Can't say that I blame you for being tired of being "sick & tired." It's a horrible feeling. I would agree that you have given it enough time for your body to adjust. The question is really what to do from here? Taking nothing is a risk, but then again, feeling crummy everyday is no way to live.
Have you been on Copaxone? If not, do you know if that would be an option for you? I've not been on it, but it's supposed to be much better side-effect wise.

[garrysgirl]

Rebif is the first medication I have tried so far. Since losing my medical insurance I haven't been able to discuss things with my doctor. Thank you for helping me.

[doggiemom]

Thanks for the reply. It just doesn't seem to me that the shots are helping. I figured I've given my body plenty of time to adjust and I still feel terrible from the side effects. I guess I'm sick and tired of being sick and tired. At least I'm unemployed right now which turns out to be a good thing I guess. There's no way I could work all the hours I did before feeling like this.

I've been on rebif for 2 years, you can't tell that its working unless you get the another MRI and they count the lesions. It generally makes me feel worse, the side effects and bruises from the shots make me miserable. But my checkup showed reduced lesions and i haven't had a full blown flare since i started it. I'm a little bitter about it all still.