Have had my delivery of Rebif and injection nurse is coming on Monday for my first dose. I would just like to hear some good story’s about Rebif. Everything I seem to have read since choosing my dmd is how awful Rebif is. I was aware of the side effects but liked the idea of small needles, x3 per week, and the Rebi smart to help me!! Also if I needed 2 nd line treatment thought I had to have tried beta interferon first? Just quite scared now that I have made the right descision. Thanks. X
Hey I’ve been on Rebif for 5 months and all in all its fine! Needle wise 5/10 times I don’t feel anything when it goes in. At worst it’s like someone flicking you with an elastic band! The best way I found to mange it is: - rotate sites so right stomach Monday, left leg Wednesday, left stomach Friday, right leg Monday etc. keep notes of your sites to remind yourself. - always inject at night 10pm ish - 2 neurofen 30mins before injection, inject, 2 nytol herbal, crash out, wake up 2 more neurofen. After a while you’ll not need the nytol or nerofen! But stick to your regime. Good luck
Hi I’ve looked into rebif a lot and although there are some people including myself that react badly to it many many more people find it works well and the side effects ease, my aunt was on the rebif trials and has stayed on it and finds her ms is alot better, as with all drugs you never know until you try, all I would say is I found the flu like symptoms manageable with normal pain killers but it was other symptoms I couldnt cope with but this only happens to a very small number of people, give it a try you can always stop if it dosent suit you Jane x
I’ve been on Rebif for eight and a half years. I take other drugs to manage various ongoing and residual symptoms.
I’ve only ever really had mild sensory relapses - the first two I had (before I was diagnosed) were by far the worst but my fatigue was absolutely crippling. I would sleep for nineteen hours some days and I remember one time where I didn’t work a full week for about four months.
It took me three years to get on it once I was diagnosed - at the time I was living in an area where it was cost embargoed - but I waited and waited, turning down trials for other drugs, because it was all about getting on beta interferon. I ended up part of the risk sharing scheme (although, ironcially, if I’d been diagnosed where I’m living now, I’d have got on it straight away as there have never been any cost implications here)
I was very lucky. I really didn’t experience any side effects - I did wake up a couple of times burning up and dying of thirst but would feel fine in the morning - although I do remember if I injected in a different place, sometimes I would feel a bit rubbish the next day (I have never injected in my stomach - again, the thought makes me gag) and I still get the flu like symptoms sometimes if the injection is too cold or something. The injections aren’t too bad but then I never fussed over them anyway - I would put up with just about anything to feel better. I started on 22mg but increased to 44mg after having a relapse about six months after starting - totally not related to the Rebif, just personal stress)
It was actually my ex-boyfriend who noticed the difference. He just commented one day that I was able to do a bit more (we were renovating a house together at the time (great move!) and I’d basically been in bed for eighteen months) but I was actually able to do some painting. I’d say that was after about three months (which was always the time they said it would take to come out of your system if you wanted to try for a baby - it’s now been revised to one month) I consider that the “bedding in” time. I know it’s not supposed to (as pointed out to me by my neurologist - in fact, I don’t think he believed me!) but the thing it helped me most with was my fatigue.
But I firmly believe it’s kept me going. I have never really had any mobility problems (I have a very strange left leg following stupidly working a lot of overtime a few years ago and ignoring it but Pregabalin helps that) I still work thirty hours a week (went part time this year following a relapse - my first for two years) and generally have a pretty good quality of life. I changed to the Rebismart last year as my injections were becoming really painful (I’d lost a lot of weight - nine stone - and had no fat left to inject into!) and due to the cross over with the new injections arriving and me not having any training on how to use the machine, I was off Rebif for three weeks and it was like being back in the bad old days. Overwhelming fatigue and I just felt like I was running on empty. Three weeks back on it and normal service resumed. I’m not having a great time at the moment and I think it’s because my Rebif has got too cold but I’ve got a new batch now and I’m waiting for it to kick in. The Rebismart keeps track of your injection sites and will tell you where to inject next. I inject before I go to sleep (around midnight normally) and didn’t need to take anything after the first few times to be honest.
All I will say is it’s horses for courses. If it doesn’t work for you then there are others to try.
Good luck with everything and seriously, I hate needles (I’ve passed out before having a blood test and having a canula inserted for IV steriods) but the self injecting has never phased me not even when my old MS nurse did a demonstration to show how strong the old injector pens were and the water shot halfway across the room - although my ex turned very pale and nearly ran out of the room screaming! 
xx
Somehow, a paragraph has gone astray!
To be honest, I chose Rebif down to my own laziness - I didn’t fancy mixing up stuff, injecting every other day and the thought of injecting into a muscle myself makes me gag (still does!) I’ve been advised by my current MS nurse that it is the best performing out of all the inteferons so I made the right choice.
Oh, and you’ll have to have regular blood tests just to check your liver function. I think it was one after the first month then every threee months and now it’s every six months.
If you get them badly, the side effects suck, but most people find that they wear off after 5/6 months and paracetamol and/or ibuprofen help you through that time. And it’s worth it - Rebif is the best of the bunch according to recent studies so, hopefully, it will do for you what it’s done for me: no relapses since I started on it 18 months ago 
I hope it surprises you at how easy it is
Karen x
Hi,
I have been on Rebif, since April 2011, and I am doing really well on it and the Rebismart, is a great piece of kit, which is really easy to use. I hope it works well for you.
Regards
Gareth
Hiya
I was on Rebif for about 3 years and never had any problems with it. I did the injections at night and took 2 ibrupofen when I did them, just incase I did have any side effects. If I did I slept through them.
I started off doing the injections with the Rebiject autoinjector but changed to manual injections quite quickly (the noise of the auto injector made me jump and pull it out too quick!) I think they’ve got a new version now which is much easier to use.
I needle is small and thin so you hardly feel it.
I did get a few site reactions but mainly while my body was getting used to it. These would last about a week in the beginning after about 3 months on it, they would be gone within a day or two.
I had to stop taking it as it stopped working for me so I changed to Copaxone (I had a nightmare when I started that, with pain and site reactions). So for me Rebif was a walk in the park!
Good luck, you’ll be fine I’m sure.
Sue
x
Hi,
I’ve been on Rebif since 2000. It’s worked very well. The first injection is the worst, you worry about it and then wonder what you were scared of. I started with the pre-filled manual injections.
I use the Rebismart now, as that’s the only thing on offer here and it’s great.
I injected for the first time and waited for the side-effects, but they didn’t arrive. I was so amazed that I got rather drunk and suffered the next morning (self-inflicted).
I was relapsing every 6-8 weeks, with little remittance to help me recover, but on Rebif the relapse rate is about 1 in every 3 years. I’m still active, still mobile and happy that I haven’t progressed, which is now down to good luck, apparently.
Best wishes,
K
Hi I started on Rebif just over a month ago, they stared me on a titration method gradually increasing the dose (8,22 then 44mg) over the first month. I was nervous doing the first injection, like many people the thought of self injecting was horrible but once the first one was done I did wonder what I was worried about! I have been upto the full 44mg for the past couple weeks, I have noticed I get a headache but after some paracetamol and by mid morning usually feeling normal, I have also noticed that my body temperature has increased but in this cold weather it’s great! I rotate the injection sites on a weekly basis - tummy week 1 then right thigh then left thigh week 3 and go round again, I have been getting some red site reactions but they are only red marks no pain at all, and I understand that the longer I use Rebif these will subside. I havent noticed any results as yet, but I did suffer a bad relapse just prior to starting Rebif which I am still currently working through, so I am looking forward to getting through this relapse and then seeing the results that Rebif can give me/ us all! Good luck, you’ll be fine, relax when you do them, the needle is very small if anything all I feel is a little scratch when it first goes in sometimes I don’t feel anything, count to 10 and its over, as quick and simple as that - and this is from someone who previously struggled having blood taken! L xx
Hi I started on Rebif on Tuesday. I dId my first injection without nurse last night. Hurray! It was quite scary but once I had done it I wondered what I was worried about. I use the Rebismart device, it tells me what site I need to inject next, in case I forget. I keep a diary too. The trickiest bit is taking the cap off the needle with my dodgy hand! I have six injections at 8.8ml then six at 22ml before moving on to 44ml (at least I think it’s ml probably got measurements mixed up!) …just before Christmas. The nurse said I would probably get worse side effects when I move upto Rebif 44. Of course I could be lucky! So far no injection site reaction showing, although its only been three days, and only side effect has been tiredness. Fingers crossed on that! I can only say that it hurts an awful lot more when my cat decides he wants to sit on my lap and pad me than the injection. Hope it goes well for you. Mish x
A big thank you to everyone for replying! I feel so much better just gearing your stories are not about the doom and gloom of using Rebif. Keeping my fingers crossed I am one of the lucky ones!! Thanks again. Carolyne. X