Horrible headache and eye pain

[BWalters34]

I am on the 44 dose for a week now and the headaches are awful. I have terrible eye pain all the time. I have to wear sunglasses outside even if cloudy and keep blinds and drapes closed all day. No lights on at all. I was taking Aleve but it started to cause bad stomach pain. Nothing seems to get rid of the eye pain or headaches, they just take the edge off. Anyone else having this problem?

[polly2448]

Hi,
I had horrible headaches the first year on rebif when on the 44 mcg dose. I went to the 22 mcg and after a short while the headaches stopped. Talk to your doc
Hope this helps

[gbash]

Ugh

I've been on Rebif for three weeks and will be ramping up to 44 mcg in a few days. The headache has been 24/7 since I started. Aleve and Tylenol barely take the edge off...just enough so I can function. I sure hope it gets better with time. I don't get eye pain, but I get double vision at some crazy times, even in the middle of doing nothing but watching television. I'll appreciate updates as you go.

[BWalters34]

still there

Thank you for your replies. I am still having bad headaches BUT they are not as horrible. The eye pain has gotten better too. The night of my shot and the whole next day are awful. Nothing I take gets rid of these headaches either. The side effects let up the next day for my shot that night. Seeing my neuro tues. to discuss.

[BWalters34]

Ok so I am going back down to 22. My blood count keeps dropping. Hopefully that will stop and the side effects will calm down.

[gbash]

The constant headaches and body aches got worse with going to 44 mcg. My neuro wants me to stop the Rebif and talk to him about taking a different med. I think I'll just go without any. All the DMTs have very low success rates and I only took Rebif because it had no cost for me with their copay plan.

[Cat Mom]

Hi BWalters (my maiden name was Walters so your post stood out!). I started on Rebif from Dec/05 til Aug/07 and never got rid of those "flu like." side effects. That bottle of Advil went everywhere with me, if I ran out I was toast.

Thank God the med didn't work for me and got switched to COpaxone, which did the trick (so far). Upon switching, i realized the Rebif made me feel worse than my MS... seriously, I'm not kidding!

Haven't been on steroids since Jan/09 so not switching to anything new. Maybe some Members who are taking the Orals can give you some perspective. Meanwhile, I really hope your side effects calm down.

Jen

[football-mom]

I had horrible headaches with head pain coming off Rebif, but not when starting. Another alternative is staying on the 22 mcg dose for awhile. I actually never took a 44 since the 22 made me so sick with flu symptoms. I talked to my doc about staying at 22, and he agreed it should be okay.

[BWalters34]

22

So I have been back on the 22 for a few weeks now and the flu symptoms and bad headaches are still here. I have another blood test next week. Hopefully my counts haven't dropped anymore. I tell you I am over it with this med.! I felt like crap before I was on it, now I feel even worse on it. No thanks gotta figure out a balance of quality of life and meds.

[BWalters34]

Hi BWalters (my maiden name was Walters so your post stood out!). I started on Rebif from Dec/05 til Aug/07 and never got rid of those "flu like." side effects. That bottle of Advil went everywhere with me, if I ran out I was toast.

Thank God the med didn't work for me and got switched to COpaxone, which did the trick (so far). Upon switching, i realized the Rebif made me feel worse than my MS... seriously, I'm not kidding!

Haven't been on steroids since Jan/09 so not switching to anything new. Maybe some Members who are taking the Orals can give you some perspective. Meanwhile, I really hope your side effects calm down.

Jen

I know what you mean with having to constantly take pills to get through the day! I am thinking about oral because I have tried Copaxone, Beta, and now the rebidose. Hope to figure it out soon. It is so stressful picking a new med to do a new science experiment with my body. I hope the Copaxone works for you. Rub your injection sites allot so you don't get those dips

[Just2tired]

Hello. I just wanted to say that I am not taking the same meds you are on but whenever I would get a headache or migraine I would take ibuprofen and drink coffee and it still didn't help. One day a friend told me to drink a sugar free rock star energy drink. Initially I was against it cause of all the things I had heard about it, but my headache got so bad one day I didn't care I just drunk it. To my surprise my head ache went away in minutes. Not every time I get a real bad headache or migraine I just drink about half of a rock star and I am good. Now I am not saying energy drinks is for everyone, but if you have taken everything you can think of to get rid of the eye pain and headaches nothing works then try the sugar free energy drink out and see if it works.