Hi, Quick question… I am on Rebif 22 do you automatically move to 44 and how is that decided? Only ask because my injection nurse is coming next week for my first 44 injection. Have just had my delivery and it is 22 as Bupa said they have not received a prescription to up the dose. Have phoned MS nurse who is looking into it but wondered what the difference was and who decides on the dose. Thanks. X
The neuro decides on the dose - it’s on the prescription. A lot seem to stick at 22 these days.
I had the same problem when I started on Rebif. The MS nurse was surprised when I asked about 44 as the other patients she had on Rebif were all on 22, but I insisted so she talked to the neuro and he agreed with me (I was classed as “highly active?” at the time). It meant a bit of faffing about for her with paperwork, but because I caught it early and it didn’t take too long, I got the 44 in time.
If your neuro agrees you should be on 44, staying on 22 for an extra couple of weeks is probably no bad thing anyway - it’ll give your body a better chance to get used to the side effects so 44 doesn’t hit you too badly.
Thank you Karen, an extra couple of weeks will suit me fine. Just about back to normal and managing side effects and work! Will wait for them to get in touch with me.
I was only on 22 for two weeks before I moved upto 44 and gosh having real problems with side effects still. I do hope spending longer on 22 helps you to move onto 44 with more success : ) Mish x
Hi Mish, Sorry to hear you are still having rough time of it. Do you think going back to 22 for a bit longer would help you? Don’t even know if you can do that? I got a message yesterday to say I am to stay on 22. Had been told by injection nurse I would move to 44 next week but my delivery arrived on Tuesday and it was 22. After phoning MS nurse it seems neuro has no plans to move me up to 44. Not sure why or what difference it makes being on 44?? I am actually pleased, as I am only just used to 22 after 3 months and am now fine in work. Still sleep in the afternoons tho. Am just about reaching a point where I feel ‘normal’ !! Still take paracetamol and ibuprofen every few hours but friends have commented I am looking more like myself again. Stick with it and don’t forget only 7 more sleeps until half term. Xx
Hi So glad you are getting used to 22 now. Saw my ms nurse this week and she said that she thought it unlikely things would improve now but that we would give it until Easter to be sure. She talked about swopping to copaxone if things stay the same. I think she might have said something about going back down to 22 but I can’t remember for sure. She was going to speak to my neuro I think. I am happy to stick it out, work changed my hours to try and help but gosh feel permanently tired. Roll on half term indeedy! I am not discharged from my neuro but at our last meeting my neuro said I was unlikely to see them again unless of big problems. So my ms nurse will liaise with her to talk about my medication. Glad things seem to be improving for you. Rebif 44 is twice the strength of 22 but what the difference in benefit is I don’t know. Except for the two paracetamol is more effective than one principle…if that makes sense. I don’t know why some people are prescribed 22 and others 44. Maybe someone else will know? Mish x