Hi everyone, My Rebif arrived this morning, not too sure how I feel about starting it, getting mixture of emotions from pure excitement through to panic! I’ve told my 5 year old daughter all about it and she’s been brilliant, lots of questions for me which I answered as honestly as possible. I’m going to self inject without a device, just wondered in I need to take them out of the fridge for a while before I inject? Has anyone experienced any unwanted side effects? Looking forward to taking a positive step forward to sticking two fingers up to my MS! Thanks for reading x
I used Rebif for 4 years and I remember when my box of kit arrived and it’s like opening a can of worms. As you say, it feels good to be doing something positive against the MS but it also makes it all real. I’m not sure how long you have been diagnosed but I hadn’t been diagnosed very long and was still hoping there was some horrid mistake but there was no denying it when my Rebif kit arrived.
I did get a bit achy after the first few weeks’ injections but as long as I took ibuprofen with the injection and every 4 hours afterwards it was easily controlled. That only used to last up to lunchtime the next day so it was bearable and my legs were quite achy anyway from the previous relapse so it was hard to know what was side-effects and what was just MS. The side-effects wore off just before I went up to the full dose. I did get skin site marks, about the size of a 50p coin, red but not painful. They used to last a week or two but at least you have a visual reminder of where you last injected so it makes rotating the sites really easy
I then had 3.5 really good years on Rebif but I’ve had 2 relapses this year so I’m off it now, only stopped taking it a week ago, and am waiting for test results to start on Gilenya.
And yes, do take them out of the fridge about half an hour before you inject. If you do it when the syringe is cold it will sting whereas if they are room temperature you will barely notice it.
Thanks for your reply Tracey, I was diagnosed with MS back in 2005 but had hardly any symptoms ( optic neuritis and a little tingling) so my neurologist ( a bad one!) didn’t want to do anything for me, believe me I had no support at all I was just given my diagnosis and sent on my way! I’ve since swapped hospitals and neurologist and I now receive fantastic support. I’ve only just decided to start rebif as I wanted to have a family. I feel I have now got to the stage where I need to do something positive. I had a very bad relapse in February this year and couldn’t walk. Thanks for your advice on the injections it’s put my mind at rest. I’m sorry you’ve had a couple of relapses hope they weren’t too bad? Good luck with your test results, hope you get to start Gilenya soon. Thanks again Jane x
I’m glad you have a better neuro now. It’s amazing how they vary so much.
I was quite glad that I had to be referred to a prescribing hospital for DMDs as the team (neuro and nurses) are really good there.
I was dx’d following two relapses in 3 months and the second one was a disabling relapse. Like you I couldn’t walk so that is why I went straight onto Rebif. This year the two relapses affected my legs again. One in March affecting right leg and a slightly milder one in June on the left leg. Neither were as bad as the one four years ago but as I was on Rebif my neuro thought we should change DMDs as I shouldn’t be having relapses like this when on Rebif I was quite happy on Rebif and had got used to injecting. Still it will be nice to have a break from it.
We just have to see if my heart is okay for Gilenya and if not I’ll probably choose Copaxone which means more injections.
Keep us posted on how you get on with Rebif. Any date set for the first one?
Yes it’s amazing how different doctors perform, sounds like you’ve got a good one. It sounds like your having a tricky year, hope that you enjoy your break from injecting! Fingers crossed that they’ll be no more. I’m going to start tomorrow evening after work. I am on my feet for pretty much 13 hours (only twice a week Mondays/Fridays) so don’t want to have any symptoms on those days. I am opting for mon/wed/fri evenings, so I can have the weekend free! I’ll keep you updated… Jane x
Like Tracey said, take them out of the fridge 30mins before you inject.
I know how you feel. I felt exactly the same when the man delivered mine.
Don’t worry though. You will be fine. I had no side effects whatsoever. Just a little sore where I injected every now and again. Just keep rotating the injection site to help with that a bit.
Hi Shazzie, Thanks for your reply, it’s good to know that not everyone gets too many side effects from rebif! I’ll try not to worry about it now. Jane x
Only just been (un)officially diagnosed by a fabulous Neurologist, but to make it all “official” I am seeing an MS Consultant Specialist in November. My Neurologist did briefly mention DMDs/daily injections. Just wondering, are all the DMDs you are discussing daily?
Hi missylala, I’ve just been through all the information re DMD’s and there is a good website called http://www.msdecisions.org.uk/ I am starting Rebif tomorrow and will need to inject 3 times a week, some drugs you choose can be daily or weekly. You will need to speak to your neurologist regarding which therapy they think is best for you. Best of luck with your appointment in November. Jane x
No, some are daily, some are once a week, some are 3 times a week. The best place to start comparing is the msdecisions website. Just google it. Keep in mind though that your specialist may not offer you the complete choice so this will only give you an idea of what is available. Keep an open mind until you know what is on offer for you.
Hope this helps
Hi, I was just typing as Tracey replyed. She has said exactly what I would have said. The http://www.msdecisions.org.uk/ website was very useful in making my decision. Good luck in November. Jane x
Hi, I thought the MS decisions was very good it helped me out loads. Good luck for November. Jane x
I do mine mon/wed/fri so have tthe weekends free! No problems apart from it really hurting now but realised the only thing that had changed was i stopped putting it in the fridge,so its back in there and no pain so far!!!
Eeryyone is different so for me the colder the better others do better with it at room temp!!
As Shazzie said rotate the sites!!! I had no side effects either.
Hope all goes weel for you
kate x x
Thanks guys, much appreciated
Thanks Kate, It sounds like it will be a little trial and error to begin with! I will definately rotate sites. Jane x
Hi. I have been on rebif for about three months now. I’ve had very little side effects in terms of flu symptoms and don’t take painkillers with any injection now. I only did that for the first few injections and did not do it through the day. I have marks from the injections which don’t look good and do get a bad headache usually once a week but compared to a relapse I can cope with this. Good luck with your injections hun xxx