Hoping for some advice. I have been on rebif 22 since 14th February 2011. I really would like to go up to 44. I phoned the rebif line tonight for some travel advice. Their recorded message whilst on hold said words to the effect we should all try 44. I have asked my neuro in the past. He said you’re fine on 22. So ok I am - I have only had 3 -4 mild relapses. But surely 44 is more effective than 22 so perhaps I might only have had 2 mild relapses on 44. And my progression will be slower than on 22. I am a real cynic thinking he is saying that I am fine on 22 as 44 would cost more. How can I fight my corner to get up to 44 - what recommendations and evidence is out there? Yes I am aware 44 might produce more side effects when currently I have none but I am prepared to take that chance. Many thanks in advance for all your help Hugs Min xx
Hi Min,
Has your neuro given you a reason why you can’t be on the 44 dose? At the mo I am on a 2 month break from rebif. I started it last August and titrated up to 44 dose. However I have found some of the side effects difficult such as bad headaches,flu symptoms if I don’t take paracetemol and stiffness in my legs.Basically I felt worse on the drug than before I started it. So my nurse suggested I have a 2 month break and we can reassess the situation then. I may try copaxone.
If you are tolerating the 22 dose well and not having any bad side effects and no relapses then maybe it is best to stick with that. Rebif is a strong drug.
Cathy
Hi Min
I had exactly the same experience as you. I also thought it might be a funding issue but when i pursued it i was told it definately was not.
I felt that i wanted to be on the 44 to give me the best possible chance. I told my neuro this and he said i was ok as i was. I then told him that my choice was to be on 44 and i wanted to up my dose - that if i was to experience side effects that i could not manage then at least i had tried it and could always go back to 22.
I was quite insistent and he gave in and gave me the 44. I got mild side effects at first but am still on the 44 after 6 years.
I have not relapsed once so far (touch wood)
I can’t see what you have got to lose.
Sometimes we have to fight for what we want. It is your ms and your decision on treatment options - don’t let them fob you off!!
Best wishes
Teresa. x
Teresa - we are definitely on the same page exactly same rational for wanting 44. Good for you for fighting for it - why should things have to be such a battle we have enough to cope with? Now you’ve got the reassurance in your mind you’ve got the best treatment. I want that too and I will fight and shout. Cathy neuro said I was doing fine on 22. But how on earth does he know he can’t see how much I’m progressing unless he’s got magic MRI eyes looking in my head. Now I’m being silly but I’m cross - not with you with my neuro Thanks both of you for your replies Hugs Minxx
i presumed when starting on 22 6 years ago that i would be upped to 44 as a matter of course but it has never really been mentioned as i seem to be doing well on the 22 dose ( no real major relapses in 6 years ) just a few minor blips as i call them
I wasn’t offered the option of staying on 22. They put me on 22 for a month to help my body get used to the drug then immediately upped it to 44. I haven’t been on 44 for long and get stinking headaches and flu stuff but it does seem to be gradually easing off. It seems that it must depend on where you live as to what they decide to do with you!
Boo x
Hello I wasn’t given the option neither I started on on 22 then went to 44, I have been on 44 or for 4 months and I can say that my side effects have now subsided. When I went to 44 the side effects were really bad and I was off my feet for at least 3 days a week Good luck Helen 