Terrible Rebif side effects....

[Hartzmom2]

Last Wednesday I did my first 44 shot.. i was miserable thursday and friday. Achey, headache, fever, i was so miserable my skin hurt...

Has ANYONE else felt this way???

I called my neuros office, and MS lifelines. They told me no more shots of 44, they are sending me a months worth of 22's to take then want my to try the 44 again after that. Is this common?

[maximumlite]

Hi and sorry to hear that you feel miserable, I was wondering how did the previous shots treat you, I have 2 shots left before I move to the 44, for other than being a little more sweaty its been good. When they called to see how I was doing on my shots they said if I was having any trouble they would have my neuro keep me on 22 for another month, I said no because things have been going good, I hope the 44 does'nt change anything, but we are all different. Did they have you skip Fridays 44 shot while you wait for more 22's. I just want to wish you the best of luck and I will watch for future post to see how you are doing

[Hartzmom2]

the previous shots had been fine. my first 22 made me achey, but it was nothing like the 44.

thanks for the reply and the well wishes

Hopefully the 44 is better to you than it was to me!!

[Lendi]

So sorry to hear you've had such a bad reaction. It may just take your body more time to ramp up and adjust to the medicine. Hope you feel better really quickly.

Ugh, you're scaring me. I just finished my first week of the 8.8s and have been feeling alright. But then, I'm only going up to 22. That was the deal we made to convince me to even take one of the injectables. We plan to discuss maybe moving up to 44 at my next appt in October.

[babygirl_vic]

I am on a "break" from Rebif, but I have had those days. My experience with Rebif Side-effects is like the flare-ups, you never know how you're going to feel!! LOL

Hang in there and make sure you let your neuro know about it!!

[deescee]

On 22 mcg. for many months

Because of my migraines my neurologist prescribed 22 mcg. of Rebif permanently. I have been on it for 6 months, and I have not been experiencing bad symptoms from it lately. I do take an Excedrin Migraine pill a few hours after doing the shot, which is down from two excedrins a day after a shot. But it really makes me mad that I'm charged the full amount for half the dose. If anyone knows how to get around this, I'd appreciate hearing about it.

[Kimba22]

descee,

I was charged the same amount for the 22 mcg dose as the 44mcg when I had to switch to the lower dosing of Rebif as well. Charging the same cost as the full dose for 1/2 the dose is just WRONG. Shame on you, Serono. I still couldn't tolerate the side effects at 22mcg, so had to go off the medication.

Hope you can find/ use a pharmacy that charges less for Rebif or even the 22mcg dose, and maybe you can seek possibilities from your neuro.

For others questioning the lower dosing, it happens more often than you may think. My neuros still wanted me to try to take it, hoping the lower dosing wouldn't cause my problems. (Each person reacts differently to the meds, and I was "told" by 2 prominant MS Specialists, at different MS clinics, the drug "can" still be effective at the lower dosing ... but I haven't seen any studies I can share "proving" that.)

Good luck to all of you. Try to remain optimistic, not everyone has an ongoing nightmare to share. For many, side effects steadily improve and the med stabilizes their MS.

Best Wishes,

I just started Rebif as my first dmd two weeks ago. Before starting I negotiated with ny doc that I would only go up to 22, I just personally feel there has to be a balance between fighting thus disease and feeling sick all the time. During discussion I cited Rebif's own info that there's only about a 5% difference in effectiveness between the 22 and 44 and u personally felt it was an acceptable difference. Check the Rebif website and your packaging, I don't remember where I git the figures, but it was from somewhere easily accessible because I didn't hunt for it too hard.

Actually I found it for you, in the prescribing information sheet:

The percentage of exacerbation reduction at two years is 29% and 32% respectively. That's the info, decide for yourselves.

[Kimba22]

Thank you for sharing this info, starry1! I think this will help more people in their decisions. First, to possibly consider trying this DMD. Then, to request to lower their dose if 44 mcg is making their lives truly miserable and they can't tolerate or adjust to the higher dose. (Some people eventually can still work up to the higher dose, it just takes their bodies longer to adjust to it.)

It's been 7 years since I was on it. I don't know if that was listed in the prescribing info yet then, or if I just didn't read and/ or understand the literature well enough back then .

Kudos to you for reading the prescribing information so thoroughly and making a decision you felt comfortable with.

[workinmammaof2]

unrelenting side effects

Hello all -

I had side effects from Rebif with pretty much every injection 22 or 44. I was miserable on it. Constantly achy, headaches. I had similar reactions when I was on Avonex several years ago also...every week.

I just could not tolerate interferons. Failed Copaxone after 4 years because of 2 flares in C-spine while on it last year. So after having too much difficulty with Rebif and needing to be on something I started Tysabri in December. I tolerate it so well! And after 9 years of injections daily or 3 times a week or weekly it has been a relief!

So now I actually FEEL GOOD without flu-like side effects all the time.

Hope things get better for you, but if they don't, know that there are other options.

I forgot to mention that I had no side effects on Copaxone other than welts from the injections.

:-)

[woohoogirl]

Hello all -

I had side effects from Rebif with pretty much every injection 22 or 44. I was miserable on it. Constantly achy, headaches. I had similar reactions when I was on Avonex several years ago also...every week.

I just could not tolerate interferons. Failed Copaxone after 4 years because of 2 flares in C-spine while on it last year. So after having too much difficulty with Rebif and needing to be on something I started Tysabri in December. I tolerate it so well! And after 9 years of injections daily or 3 times a week or weekly it has been a relief!

So now I actually FEEL GOOD without flu-like side effects all the time.

Hope things get better for you, but if they don't, know that there are other options.

I forgot to mention that I had no side effects on Copaxone other than welts from the injections.

:-)

You and I followed the same path, however, I did not have any problems with Avonex. I told my neuro that Rebif was making me feel so bad that I wanted to die, but that I would have to feel better to be able to die...I said it a joking way so that he didn't think I needed to visit a rubber room. Treating MS is like a crap shoot!!!! Best of luck!!!

I'm not sure I'm going to be able to continue Rebif. I got very sick after my last shot of the 8.8. I'm due to start the 22 tonight and I'm scared to death of how I'll feel tomorrow. The last two days I was very dizzy, achy and nauseous, not to mention hot and sweaty. I talked to the lifelines nurse and she told me to hydrate more, other than that I've been doing everything right.

[maximumlite]

I just started my 44 this week and it has been good for me, the biggest side effect is the sweating, I was told to hydrate more, my body temp moved up to what most people consider normal by was a slight increase for me. MS Lifelines called to see how I was doing and asked if I wanted to stay on 22 for a month more, I said no. I still have to get blood work done and that could derail me as I have high liver enzymes to begin with, so for me I'm praying I'm good in that dept. Sorry you are having so much trouble