I am so confused. I have been on rebif 44 now for nearly six months. I really wanted to be on rebif 44. As I understand, it helps limit severity of attacks better than copaxone and therefore slow progression of disease, by limiting the effects of any residual symptoms. Having never fully recover use of my arm from last relapse that was very important to me. However six months in I am still really struggling with bad side effects. Two hours after injection at 8pm it hits and I have to be in bed. I feel awful until lunchtime next day. Some days I feel sort of knocked out for rest of day and don’t feel better til tea time. Occasionally I have better mornings when I am awake by 10am but then back to square one…like today! I still work. My hours were changed to help me but I keep losing up to three days a week and not sure how long to keep going. My thyroid is now playing up and I feel permanently exhausted. It has been suggested I change meds. What I don’t know is whether to consider swopping to rebif 22 or copaxone or stick at 44 to see if things improve. Does anyone know if rebif 22 is as effective as rebif 44 at helping stop severity? Does copaxone stop severity of relapses too? At the moment reducing number of relapses by 30% on average is not my main concern. In theory if you had one relapse a year it would only delay it by around three months so would not seem to make all side effects worth while. If however it stops them being so severe it is. So confused. Can anyone help me make sense of the options? Thank you Mish x
Rebif22 is not as effective as Rebif44, but the difference is small enough for some neuros to only prescribe 22. I always thought that the main difference between Copaxone and the interferons was the lack of evidence that it slows progression, in which case I can only assume that it does reduce the severity of relapses, but you’d probably be best to check with your MS nurse.
I really struggled with Rebif44 side effects, but they did get better eventually! I would say they were at their worst for the first 8 or 9 months or so and then they gradually got better. I can now get away with 4-6 paracetamol on Rebif days (I inject in the morning) and be fine. I’ve been on it for 21 months now.
I persevered mainly because I’d already been on Copaxone, I wasn’t eligible for Tysabri and there was no way I was going DMD-free. I’m glad I did as the side effects are mild and no problem now and I’ve been relapse-free, but it was a struggle
Thank you for replying Karen. I need to decide whether to swop by September in case my hours at work change again. I sort of hope they do. They changed them to help fit round meds but i am finding new hours difficult too. Hope to get side effects under control one way or another by then. Getting thyroid under control may also help tiredness to, I guess. Thanks for your help. Mish x .
I haven’t started rebif as yet however one question I asked was if I struggled on 44 could I stay on 22…the m.s nurse said this would be fine and as far as she has seen when people have been on 22 it has not made a massive difference if any to those on the 44. Hope that helps. I’m getting nervous about it as I really am worried about side effects especially as I have a young child to look after. So far the m.s has impacted on him very little if at all… So for meti be wiped out, this would scare him x
Hi I think I have been one of the unlucky ones but i chose it knowing there was a risk of side effects and still want to give it a chance. I think side effects are not normally as long lasting or as bad as I seem to have experienced, so please don’t worry. I would chose it again. Have you gone for the rebismart gadget? If you have it is really easy to use. The nurse sets it all up for you and explains how it works. If you can get someone else to be there, if your brain is anything like mine, just as a helpful back up. My hubby was able to be there with me, which was good as I can’t reach a couple of injection sites, got a dodgy right arm, so he learnt how to do it for me too. Basically you don’t see needle once loaded, you press a button and it does it for you. Even reminds you which injection site is next…very useful! It is scary first time because you don’t know what to expect. But once you have done the first one you will know it is not so bad. Give yourself a pinch and that’s as bad as it gets really…or at least that’s as bad as I have found it. We all respond differently to it, I shall cross my fingers all goes well for you. Mish x
Hi Mish, I’ve been in a similar position so will share my experience. Like you, the side effects of Rebif 44 were too much for me & I regularly had to call in sick to work, having managed to work through most relapses! Not ideal since I work freelance i.e. only get paid for turning up. The only way I managed to drag myself out of bed the day after injecting was to inject at 2pm, dose myself up to the max with ibuprofen & paracetamol, & sleep, frequently from early evening. MS nurse suggested dropping to 22. I did this & effects eased very little. I had an appt with the Consultant not long after. We discussed the side effects, the two relapses whilst on the Rebif (only for 6 months) & I was given the all clear to stop it if I wanted to. I continued for another month but stopped four weeks ago. I feel much better & less fatigued. I just felt so unwell on it. I have scans in the next few weeks. Dependent on the results, it will be either Copaxone or potentially Gilenya for me. I initially decided on Rebif having felt it seemed the most effective, and that the injection regime would suit. I don’t regret the decision at all. It’s just unfortunate it didn’t seem to suit me. Good luck with whatever you decide. Anne
Hi Anne, thank you for your reply. I had to have days off before Christmas too, then they changed my hours to fit around meds. Luckily my job is only part time so was able to do that. However I work in a school and hours may change again in September plus I don’t really want these symptoms indefinitely. I see my ms nurse at end of month. She said after last appointment to call her mid April to discuss changing if still having problems but I have been putting it off hoping for improvement…still waiting! Lol I think if no change by then I will try dropping to rebif 22 first, just to give it a try. Love my rebidsmart and would hate to lose it! I just feel like I have been drugged. I am unable to wake up in the morning and I can’t focus the next day. Just feel so unwell. Glad you feel better now you have stopped. It is horrible feeling so poorly all the time. Hope everything goes well with your scans and all is ok for you to go on to a different DMD soon. Mish x
Thanks mish, its good to hear you like the rebi smart gadget…that’s what sold it for me being scared of needles. Just hope the side effects are minimal especially because of my boy. Fingers crossed xxx