Rebif

Hi, I am new to this forum, just wondering if anyone can give me some advice on how they feel taking rebif, I am due to start on it in a few weeks and I am finding the whole thing a bit daunting :frowning:

Hi

I have been on rebif since August 2012, the first 2-3 months wasnā€™t great if iā€™m honest with the flu like symptoms and site reactions. If you listen to all the advise your nurse gives up an stock up on paracetamol hopefully you can get through it.

Different people have different reactions i know two other people who are on it, one is still having problems with site reactions and the other had a really bad time when starting it and had to take some time off work.

Me, i was able to work through my side effects when doped up on painkillers but now after the 2nd month or so everything settled down. The only time i feel rough on it is when iā€™m getting steroid treatment but i do still get site reactions in that i have the rebif bulleye and they can be itchy and tender but this is difficult to avoid no matter what injection.

It just depends on the individual, injection technique and chance. I think you are bound to feel a bit crap to start with as you are injecting a foreign substance into your body.

Hopefully all this will settle down and you get over the side effects as quickly as possible.

Steph

Hi Sheena,

I have been one of the lucky ones as i didnā€™t really have the flu side effects but i did have some headaches which i took ibuprofen for.

I have injection site reactions still sometimes though. They donā€™t bother me in the slightest but look a bit ugly but i suppose i have got used to having them now.

I have been on Rebif now for over 7 years. I have done well on it. I was quite ill before the Rebif and am so glad i started taking it.

I inject manually now and donā€™t use the rebismart.

Everyone reacts differently to medication and everyones ms is different. The only way to know how it will work for you is to give it a try. You can always change to something else if it doesnā€™t suit you.

If you have any questions i can help you with feel free to send me a pm and i will help if i can.

Good luck

Teresa.x

Hi Sheena

Iā€™ve been on Rebif since August 2009 and the time has flown by! I guess Iā€™m one of the lucky ones as I was diagnosed within 3 months and went onto Rebif within another few months (that was the frustrating part as I wanted the drugs much quicker so I didnā€™t relapse again). Emotionally I found it hard to deal with as the diagnosis had come ā€˜out of the blueā€™ and part of me didnā€™t want to do injections but part of me wanted the drugs so I wasnā€™t so ill ever again and I was impossible to live with for a while!

The very first injection was the hardest but you soon get used to doing it. I used to use the Rebiject II but that was brutal and used to leave me bruised and I had trouble with the soft touch buttons as my finger tips have very little feeling in them. My nurse arranged for me to switch to the Rebismart which is sooooo much better. I did suffer flu type symptoms for the first 6 weeks or so but these were controlled by taking paracetomol and/or ibuprofen before and after injections. Now the only thing I still have to put up with is the skin site reactions, red patches about the size of a 50p coin which last up to 2 weeks. They arenā€™t painful and at least I know where I last injected. It helps with the rotation of sites lol.

Iā€™ve only had one relapse since starting Rebif and that was within the first 2 months when I was still on the low dose. I do still have good days/weeks when I have to rest up a bit but when I look back, I never imagined I would be this well compared to how I was feeling back then.

Good luck, hope it goes well. If you have any questions, just ask.

Tracey x

Hi, Iā€™m on week 9 of Rebif. Have to agree with the others in that I have felt rubbish but am starting to feel a bit better these last 2 weeks. Still taking nurofen and paracetamol every alternate 2 hours to keep flu symptoms away. My injection nurse has been great and reckons the key is to avoid the symptoms by taking tablets and letting them kick in before the injection. Then keep topping the pain relief up. Even though I have felt awful at times it is still worth it for me as I will do everything in my power to stop another relapse. Good luck. Xx

Thanks all, I was diagnosed 13 years ago, got lost in the hospital system ( thatā€™s a long story) and have managed minor relapses with steroids prescribed by GP and rest. I was referred again after a huge relapse in June last year where I went numb from waist down, I have never felt do rough and scared in my life! So nearly 8 months on I still have neuropathic pain and numb feet tingling hands and fatigue but feeling fab compared to what I was! I am now just waiting for the drugs to be delivered to me and to start on rebif I have opted for rebismart as it looks so easy, I really want to get going on them as I really donā€™t want to have another relapse like last time if I can help with its severity by taking rebif and I do know flu like symptoms are going to be better than relapse, I guess Iā€™m just apprehensive as I feel quite alone, I donā€™t know anyone else with ms on drugs,my ms nurse is great (but busy) and although can answer my questions canā€™t really tell me what to expect, really nice to read your stories many thanks for responding :slight_smile:

Do u mind me asking how long do the flu like symptoms last after each injection? Also how many injections are you helped with when you first start before your left to do it on your own? Xx

My flu like symptoms lasted the morning for two days which sucked as once i felt a bit better i had to do it again that night! I was told to do them at night in the hope i would sleep through most of the side effects.

I also have the rebismart, i was brought in on the Monday and Wednesday to do it infront of my nurse and if they are confident you can work the machine and have a good technique that might be all you get as well. Although my nurse did phone me the day after the one on my own to make sure everything was ok.

MS nurses are a busy bunch of people but nobody here minds if you send a private mail to ask more questions if thatā€™s something you want to do.

Steph

Hi Sheena, Iā€™ve had Avonex (the once a week) and OWWWW thatā€™s nasty. Then I tried Rebif for about 6.8 month and it didnā€™t get any better (but that doesnā€™t mean it wonā€™t work for you) now Iā€™m on Copaxone and even though its every morning itā€™s great! I can actually get on with day to day living ! . If you can go to Docā€™s and ask for Co-Codamol 15/500 (Codine/Paracetamol) they do a stronger one but it will knock you out ! . That will stop any aching pain in your limbs :slight_smile: Hope thatā€™s helpful. Brett

6-8 month*

Oh and yes the symtoms for me lasted right up until I had to pop again :confused:

I took painkillers before the injection and had to take them until lunchtime the next day so not quite as bad as some people. Although like you my relapse had been quite severe and my legs were still very achy all the time so it was hard to know what was the injections and what was still the relapse! I was also numb from the waist down and my left hand and arm were affected. I also had the hug and the fatigue wiped me out for weeks. That is why I was so desperate to get on some drugs. Anything is better than being that bad.

I did a couple of practice injections on fake skine then the real injection at the hospital with the nurse and after that I was sent home to get on with it on my own. At the time I was using the Rebiject and it really was much simpler than I thought it was going to be. I wish I had had the Rebismart back then as it is so much simpler and you donā€™t even have to see the needle.

You really will be fine with it, I was absolutely dreading the thought of doing the injections, Iā€™m such a wimp. If I can do them, anyone can. Best of luck, donā€™t forget to post and tell us how it all goes, itā€™s good for others to hear all about it

Tracey

Hi Sheena,

I donā€™t know whether I was dumb lucky or whether my Rebif ā€œregimeā€ worked, but I figured Iā€™d share it if it helps anyone else.

I had read something (in here actually) about how eating fresh pineapple - something to do with the enzymes in it - had helped someone with the side-effects of Avonex. I figured it might work the same for Rebif as they are one in the same.

Anyway about an hour before taking my injection I ate a good bowl-ful of fresh pineapple. And drank lots of water before and after injection. I kept this up for about a month and a half after I had started on Rebif. I never got flu like symptoms or headaches associated with injecting. The only effect of Rebif at all was the red marks about the size of a 50p at injection sites.

I really wish I could have stayed on the drug as the Rebismart was so handy for injecting and the lack of side-effects was a bonus. But after about 2 years on the drug I developed anti-bodies so they took me off it as it wasnā€™t working anymore

So that was my experience with Rebif - again I have no idea if the pineapple trick worked or whether I was just lucky, but I figured at the time it couldnā€™t hurt as all I was doing was introducing extra fruit to my diet

Hi, I have been on Rebif for 14 years. I sippose I was lucky, I didnā€™t experience like some of the above, but I used to inject at 5.30 every night, by 9.30-10ish, I started to ache, then it was bedtime, so I slept it off. I think it depends on your pain threshold too, some find it really hard, while others (like me) sailed through it. Try not to worry, its going to help you, good luck, lots of love xxxxxx