I have recently seen my Consultant to get my recent MRI Scan, it came back that there are more lesions since my last scan one of which is active (hope I have got that bit right). He has recommended that it would be best for me to start taking some medication. The two he has put down are: Rebif or Copaxone (Glatiramer Acetate) My consultant said to speack to my MS Nurse when I see her in a few week times but would really like some advise from personal experiences etc. Could anyone else help me with any experiences on either these drugs or are currently taking them? I am concerned which would be best, I have two young children (2) and a (5) year old and they need me totally especially when it’s back to school and clubs etc so I really can’t be doing with side affects. I am also very much what will happen if I decide not to take any medication is this best or not? I want to make the right decision for my family but is very difficult. Thank you in advance Michelle
Hi Michelle, I am waiting to start rebif. Rebif and copaxone are DMDs (disease modifying drugs), their purpose is to cut down the severity and frequency of relapses. Best thing to do it go to me decisions website, it will answer all of your questions, shows videos of people etc. Remember to pick the one that’s right for you and your lifestyle as there’s not much difference. Sarah xxx
Hi Like Sarah I am waiting to start rebif 44. I will be using the fag packet type box to deliver and record injections.bi choose this cos I am male and didn’t fancy deep injection or too many and I didn’t wanna see needle. Excuse. Sorry a lot f thought went into it as originally I was to have sommat else by IV once a Minh, but I wasn’t bad enough and this was one of the ones my neuro recommended. Asking for pointer from users on this set is great, that’s what I did. Hope t all goes ok for you and yurdmd fits a hectic lifestyle, kids. Mike
I’ve been on both.
I was very happy on Copaxone. It’s dead easy to inject, most people find that there are no side effects apart from some stinging, redness and the odd lump at the injection sites and, because it’s every day, it just becomes part of your getting up routine (or going to bed routine, but I didn’t risk that in case I forgot!). It kept me pretty much relapse-free for 3.5 years (just the odd brief and mild blip). I came off it because of one or two new lesions and the start of a nasty relapse.
I’ve been on Rebif 44 for a year now. If anything, it is easier to inject than Copaxone. The needle is thinner and I don’t get any stinging or lumps, just red blotches. (I use the Rebismart, a very snazzy autoinjector thing. I manually injected Copaxone - didn’t like the autoinjector.) I do however get the “flu-like” side effects. It was pretty nasty in the beginning, but paracetamol keeps things under control these days. I’ve been really unlucky though - most people find they don’t get the flu any more long before this and some don’t get it at all. The reason I chose Rebif is basically if I had to have the flu, I may as well have the best injectable DMD - and that’s Rebif44 according to recent research. I’m very happy with it overall and am feeling better than I have in yonks - it’s like Rebif’s actually helping me to improve, not just stay in remission!
The msdecisions site will help you choose though - we are all different so don’t be swayed too much by others’ experiences.
Should you go on a DMD? Absolutely YES. But of course I’m biased
DMDs reduce the number of relapses, reduce the severity of the remaining relapses, prevent disability, help to slow progression and increase life span.
I reckon that’s worth the hassle of injections and a few usually short-lived and manageable side effects.
I’m on Copaxone. I switched over from Betaferon last year.
Copaxone is daily injections but it soon becomes part of your daily routine. I find it easier because it is daily whereas with betaferon it was every other day - harder for me to remember!
Definitely have a look at the ms decisions website as the others have suggested. Apart from the fact that it gives lots of info, it also has a questionaire type thing - there are no right or wrong answers though, it’s about you, what you’d prefer and your lifestyle. It does help.
Personally I’d much rather be on something than nothing, but that’s just my take on it.
Good luck with whatever you choose
Excellent advise above as usual.
As people say its a very personal decision. Go onto the msdecision site as suggested and when you use the tool at the back think realistically how important things are to you…not just for a few days but month after month.
You can teak your answers as many times as you want.
I was amazed when doing it that I was choosing to inject myself daily,but flu was a no no for me,I wanted the flexibility of hassle free travelling without worrying about fridges and no blood tests needed to monitor levels…also no mixing as the old eyesight isnt too good.
Obviously your neuro has limited your options for you but you still need to feel in your gut that you are happy with your choice.
I started copaxone in may,it is simple to do and takes less time than cleaning your teeth. It doesnt hurt when I do it but I do bruise on my arms,I have lumps that you can feel but cant see(like a pea stuck under the skin) and they can itch when I get hot. I am happy to live with this as its the side effect risk I chose over the risk of flu.
While waiting for the dmds to be set up I relapsed,which luckily was a minor one,so I’m with Karen that yes I would grab the chance with two hands.
I wish you well whatever you choose
Thank you everyone for all your information. A very difficult decision to be made, making sure its the right one for my two girls sake.
Sadly there is no cure to MS no matter you take Rebif Injections, whether it is REBIF INTERFERON beta1a,REBIF INTERFERON 22/44/66 or even high potency injections than 66.
Do make sure that REBIF 44 is actually a high potency injections, First talk to your NEUROLOGIST and start by taking HALF DOSE of 44 and then go to FULL DOSE.
First discover what MS you have and then start treatment accordingly.