Hi Had an appointment with my ms nurse today and was hoping to hear from people that have swapped from rebif to copaxone. I am having side effects on rebif but was prepared for that and knew when I chose it this could go on for four to six months. I get flu like effects during night but the extreme tiredness carries on until lunch time and sometimes all day. Despite side effects I am happy to keep persevering for now as I only started it at end of November. However my ms nurse said she suspected it may not improve and I may have to swop to copaxone. She said to keep going on it for another couple of months but if nothing improves then I should swop because it is effecting my quality of life. My hours at work have been changed so I can have day off after injections but that means I am now working full days in between which also tire me out…it just feels like one big round of tiredness. I was keen to stay on rebif because I thought there was more research into its effectiveness against severity of relapses which is my main reason for choosing it and injecting. Does copaxone limit severity of relapses too? I was wondering what others experiences were. Whether you have swapped from rebif to copaxone? Whether you have chosen to stop on rebif despite side effects? Did you have a choice? Have you swapped and been happier on copoxane? Sooo confused all over again! Help! Mish x
Hello Mish I just had to reply to your post. Five years ago I was on rebif for 3 months the reactions were horrible I felt really pourly after ever injection. I then went on Avonex for over a year and I had flu like symptoms and then I became very unwell and then tried Copaxone and yes I am still on it 3 years later It has really suited me far more energy,( I am frightened to say) fingers crossed no more relapses. I may have been like it without the Copaxone but am not prepared to risk it so still stabbing every night. I would certainly say go for it!! Best of luck Roberta
Hi Mish,
I started copaxone 6 weeks ago and have to say I find it very easy. Ok injecting myself everyday is not ideal but to be honest I have only had 1 reaction which was only a red blotch which lasted a couple of days. I do not find it painful just a little tingle after about 3 mins which usually goes away 5 mins later. I have never tried anything else as I only got my dx in 2011 but I am hoping that this is the solution to fewer relapses and from what I have read on here it seems to be.
Good luck
Claire
i went on copaxone 4 years ago, right after my diagnosis.
i havent had a relapse except for feeling wiped out because of a UTI
if you have any problems with it, ring the connections helpline. they are great and offer solutions there and then.
i even had a copaxone nurse come out to visit me.
good luck
carole x
Hi Mish,
I started on Rebif August 2011. At first I found it ok but as the weeks went by I was getting really awful headaches which would last all day. I just seemed to be on paracetemols all the time to combat the flu symptoms or allieviate the headaches-I couldn’t take ibuprofen. My MS nurse could see it was getting me down so suggested a break from the rebif to see how I felt and to consider copaxone. I had a 2 month break which was fab-no headaches or other symptoms. I decided to give copaxone a try and started this Sept 2012. So far it is suiting me ok-I do get some skin reactions where I inject especially on my thighs-but the copaxone nurse suggested changing the depth of the auto injector which seems to be helping. I have not had any other side effects other than a sting sensation after injecting,infact I do feel more energised. Yes it is a pain injecting every day but I think the more your body gets used to the drug the sting reaction will lessen. I have not regretted changing from rebif to copaxone.
Good luck with your decision.
Cathy
I started on Copaxone and was happy on it. It kept me relapse-free for more than 3.5 years and it was easy to inject. I did have a couple of minor “blips” during that time, but nothing significant and I only developed one new lesion in all that time. However, my neuro took me off it when I started a big relapse in April 2010.
I’ve been on Rebif since June 2011. The titration stage was fine, but when I got to the full 44mcg dose, the side effects hit me like a sledge hammer. Unfortunately, it was more than six months before things started to improve and, even now, I have to take a lot of paracetamol every “Rebif day”. I’ve found that injecting in the morning is much better for me because I cannot sleep through the side effects; paracetamol keeps them at bay during the day and they have worn off by bed time so I sleep really well. I did nearly give up on Rebif a couple of times during the worst period, but persevered because I didn’t want to go back to Copaxone (it seemed pointless) and Rebif has the best efficacy data anyway. (I wasn’t eligible for Tysabri (no enhancing lesions on my MRI) and Gilenya wasn’t available at the time.)
Despite the side effects, I am happy on Rebif. A fairly recent MRI shows no new lesions and quite a bit of repair in my cerebellum (yay!) and I have had no relapses. (I did have a minor blip in the second month of full dose Rebif, but this really wasn’t significant and it was too early for Rebif to be working properly anyway - maybe it was working well enough to reduce the severity though?)
Would I have persevered with Rebif if Copaxone had been a viable alternative? I honestly don’t know. Possibly not. Would I stick with Rebif now, now the side effects are quite easily managed? Yes.
Re what Copaxone does vs Rebif. As far as I know, the main difference is that Copaxone does not have any evidence to support a claim that it helps reduce progression. It does reduce relapse rates and the severity of remaining relapses though, and therefore the disability that comes from relapses.
Hth.
Karen x
Thank you all for your replies. It was lovely to hear from current copaxone users so to speak. Cathy - yes I get all day headaches with rebif too, thankfully not with every injection but always extreme tiredness. I feel like Richard Hannah in the Thirty Nine Steps (apologises if you have no idea what I am talking about) but its like I have been drugged (which I guess I sort of have been) and have to slap myself to keep awake…not that I do…I just sleep! : ) Karen- thank you for your help with my query about effect on severity of relapse. That is my main concern should I need to swap. It is a year since my biggest relapse which has left me with problems in my right hand and arm, plus some other problems, so I am keen to lessen the effect of any future relapses. (Still waiting for OT or physio appointment!) Anyway, thank you to all. Mish x
Hi Mish Copaxone kept me “safe” for a long time. Would fully recommend giving it a go. Ive had site (injection) probs but they insignificant next to benefits. Goodluck Tracey xx
Thanks Tracey. I will give it a try if rebif continues to be a problem.