I was wondering if anyone could give me some advice on Rebif and Copaxone please.
I went to see Neuro on friday as had a few more relapses and i now qualify for the DMD TX they have given me a choice of two… I went to see the MS nurse straight away and she gave me a information pack on both the treatments and i have got to make my mind up what one i want and get back to her.
I have read all the information and watched the DVDs that she gave me and i really cant make my mind up. I was wondering if you could give me some advice on your experiences and the side effects . I know not everyone gets the side effects but it is a big decision to make .
I’ve been on Copaxone for about 5 months. I had a good look at the MSDecisions website before I made my choice. As with all the DMDs there are side effects. I’ve not had any of the more serious ones that they warn you of (I suppose they have to prepare you for the worst). I get a small sting, like a beesting, when I inject. Also an occasional little lump which has generally gone by the following day. I’ve had no experience of Rebif, but have been pleased with my choice of Copaxone. I was worried about the whole injecting process to start with but now it just feels like part of my daily routine and, looking back, I wonder why I was so concerned. They also provide you with an autoinjecting pen which you can use if you get worried about needles.
Be aware that if you would like to go down the route of Gilenya/Fingolimod in the future then NICE have decided that you need to have been on one of the beta-interferons ( including Rebif) for at least a year first. Copaxone does not make you eligible for this. I’d want to chat to my neuro about this; it might not be a relevant consideration for you.
Sorry to hear about your diagnosis, but I hope you feel confident in the choice you make finally. It’s important that the choice is yours: don’t feel talked into anything.
I originally chose Copaxone because there were no flu-like side effects and I didn’t want to risk missing taekwondo training on injection days. It worked really well for me for 3.5 years (only a couple of very minor blips). It was dead easy to inject and, because it’s every day, you just make it part of your getting up or going to bed routine. Injection sites were a bit stingy for a very short time and left red blotches. I used to get lumps from time to time that took a while to go. Overall, I was very happy on it.
Unfortunately, I started a big relapse in 2009/10 and my neuro took me off it because he reckoned it wasn’t working for me any more. I then had my worst year ever
After a lot of faffing about with the neuro, I started on Rebif44 a year ago. The Rebismart autoinjector is pretty snazzy, the needles are superfine and the injections are easy - easier than Copaxone in my experience, although the bruising is worse. Side effects in the first few weeks were negligible because the dose is low. When I hit the 44 dose, I started having quite bad flu effects. I can’t take ibuprofen (which a lot of people say is best for the “flu”) and, while paracetamol helped, it didn’t get rid of it. I considered stopping at one point, but knew it was better to stay on it so did. I’m very glad I did! I had a mild relapse a few months after starting Rebif (before it’s fully in your system), but since then I have just got better and better! No relapses, plus more energy, less symptoms and I’m reducing some of my meds accordingly. (To be fair, I’ve also been going to the gym so that’s bound to be helping too.) The flu effects were manageable by 5-6 months and I hardly notice them now - I just make sure and take 2 paracetamol with my injection and then 2 more 4 hours later.
Btw, the reason I chose Rebif44 is that recent research shows that it is the most effective of the injectables. A lot of neuros tend to prescribe Rebif22, a lower dose version - the side effects are less on it and, while Rebif44 gets better results, the difference is not huge.
As far as choosing which one to go on, it really is a personal choice and there is no “right” choice. The msdecisions site has a tool for comparing the DMDs versus your preferences - have you tried it? It’s a great website.
Whatever you choose, I hope it works really well for you.
I really appreciate all your advice i will have a look at the ms decisions site and have a look at my preferences. Hopefully this will help me make my choice so i can ring my MS nurse tomorrow and get which ever one ordered.
I tried Rebif for about 18 months but suffered alot with ‘flu like’ symptoms and injecting 3 times a week left me with angry red marks and by the time I began to feel better it was time for the next jab. I am currently on Avonex which is an injection once a week and is injected deep into the muscle which is alot less painful and very few side effects. Can’t comment on Copaxone, haven’t tried that one. My neuro told me that Rebif 44 was the best drug however and I was told if my relapses increased whilst on Avonex I would have to go back to Rebif, fortunately they seem to be under control. Hope this info is of use. Good luck.
I have not read the other replies so sorry if I repeat anything.
I couldn’t decide either so my ms nurse asked if I liked big or small needles lol! I thought this was a little strange but anyway my answer was the smaller the better.
She then said that the rebif needles were the smallest and they do not have to in as far as the others. So rebif I chose.
I have found that I only had a slight headache when I started. That was no problem as paracetamol helped. They only last a week or two and now I am fine.
I use the rebismart which does everything for you. You do not have to mix your solution, the needle comes in a little cap looking thing that you push in the bottom and then you just press a button.
I do get big red marks but they don’t bother me. They are not sore or itchy and my nurse said I could avoid my arms over the summer if i wanted.
The main thing is everyone is different. I inject monday, wednesday and friday which means I have the weekend off.
