Rebif 8.8 to 22 to 44mg - increase in side effects???

03-09-2009, 11:46 AM

Hi all,

I am American, but currently live in France, hence the username. Being diagnosed here ("officially" in December) was certainly a good thing since I have not lived or worked in the States in a while and I am uninsured. In France MS is a disease that is covered 100% by the government for those who are entitled to their healthcare system, I am as a Student, phew, if not, I would be without the Rebif I just started and probably still feeling terrible. Not sure what I will do if I have to go back home though, hopefully having MS will not be an issue at my next French residency card medical exam, fingers crossed…

Anyway, I would like to hear about different experiences with increasing the dosage of Rebif. I just finished my 6th 8.8mg shot and will go to 22mg tomorrow. I have not had any terrible flu-like symptoms thus far, only (more) fatigue and sometimes an achy back, but that is about it. My Rebif nurse said that if I am not having nasty side effects now, then I *should not* have an increase of negative symptoms when I go up to 22 and then 44mg. I find this a bit hard to believe and/or wishful thinking. I know were are all different, but I would still appreciate to hear from anyone out there who would like to share their Rebif dosage and side effect experience with me.

Thanks a bunch!
Coll

03-09-2009, 02:02 PM

I was just diagnosed in Dec. Started Rebif in Jan.
The worst reaction I ever got was my first 22mcg. I am now on 44mcg. I have a very delayed reaction, so my rebif nurse suggested taking my shot in the morning. So far my reactions are gettting less and less with each shot. Everyone is so different. My brother still gets severe flu symptoms after 5 years. Others have been very lucky and experience little or no reaction. My reactions are slight flu like symptoms, dizziness and a severe headache about 24 hrs after the shot. You sound like your doing great. You probably will continue to do so. My rebif nurse suggested I go back on 22 when I had a few ad reactions to the 44. She told me that the standard dose in Europe is 22mcg!! Obviously she was wrong if they are increasing you to 44mcg.
Good Luck! Stay positive!

03-09-2009, 09:12 PM

I had the worst reactions on the first night of the 44mcg. Woke up with chills, fever, and aches all over. Since then I have taken Alive 30min before each injection and so far it is good. Last week after being on the Rebif for 3 months I decided to try without any meds before the injection, BIG mistake, I was very sick. I wonder if I will need to take the meds before each injection for ever. It sounds that you are doing well, so good luck and maybe you will be the one that has no side affect.

03-09-2009, 10:03 PM

I have been on Rebif 44 mcgs for almost 3 years now. I can say that the first two months of the full 44 dose- gave me all the same symtoms...it took into month 3, my actual 5th month of shots before the side effects completely stopped. now, doing the shot is nothing. i can do it morning noon or night, in the car, in the bathroom, or at the dinner table, and not even think about it....And, I can say that in the three years Ive been on the drug, not one single relapse or additional lesion...GO REBIF!
Hope things get better for you soon...and FYI, in the US, Serano, the makers of Rebif, guarantee that you will never pay more then 50$ a month with, or without insurance- for this drug....they want people to stay on it. You wont have any problem if you come back to the states....
Nikki

03-10-2009, 09:49 AM

I too have been on Rebif 44mcg for 18 months now and 15 months of them were horrible and then all of sudden my symptoms stopped except fatigue but that is something some will always battle but thinking back It was tough and I don't know how I did It but as long as you keep positive. My flu-like symptoms were so bad my doc considered going back to 22mcg but was afraid I would slip back and at my last checkup was doing good so I didn't have to go through any MRI testing so hopefully this is my life the way It is Good Luck and You have to take Aleve before trust me I does help.

Rebif 8.8 to 22 to 44mg - increase in side effects???

Sign Up Today!

Join Our Newsletter

Whoops,

Thank You