Forum

Copaxone

Hi all My names Charlotte and I was diagnosed with RRMS 10months ago and started Rebif treatment last October. I seemed to adapt well as I didn’t see many of the side effects but I kept getting the injection sight reactions. My specialist has decided to take me off this treatment and has suggested copaxone to me at my hospital appointment. I need to research a bit about this treatment I have been told that there is a good website but wondered if anyone on here has had this treatment and what their experience of it was like. I always find talking to people on here so much more helpful as its nice to see how people handle MS and the relevant treatments in their day to day lives. Thanks Char xx

Hello Charlotte

Always wise to get as much information as you can as it’s a big decision.

I used the MSDecisions website to help me make my choice of DMD. I went for Copaxone. I’ve found that it has quickly become part of my daily routine. There’s an autoinjector if you find needles troublesome. The jabs come pre-prepared, so there’s no mixing needed. I keep mine in the fridge, but know that providing that I keep the syringes at room temperature there can be short periods of time out of the cool. As such it’s easy to consider holidays and trips away from home. There are potential side effects but, personally, I have not been affected by any of these. All the DMDs have side-effects associated with them: I suggest you take these into account when making your choice. The Decisions website is very helpful for this.

Good luck with whatever you decide

Malthus

Crikey! They must be nasty site reactions because I thought most people got them - I for one am covered in red blotches and bruises from Rebif! Still, I’m not exactly a spring chicken and don’t tend to show off those bits of my body in public very often :slight_smile: I went on Copaxone first time round (wanted to avoid flu effects) and found it to be very easy. Daily injections were actually easier to remember (I did them as part of my getting up routine), I manually injected so it was quick and no flu was great (in retrospect). I did get red blotches though and small lumps that could take a while to disappear. The Copaxone blotches didn’t last as long as the Rebif blotches though. Both Copaxone and Rebif can be kept out of the fridge for up to 30 days. I used to take a strip of seven syringes up to my bedroom every Sunday - avoids the risk of injecting cold Copaxone (ouch!). The only bad reaction I had was weird and, as far as I know, hasn’t happened to anyone else so I don’t normally bother mentioning it, but given your history, it might be worth asking about. Long story short, an injection into my stomach went wrong and caused a sort of explosion of red under my skin (blood+Copaxone?) that sort of burned my skin from the inside out. It took about four months to heal and I have a ragged scar that is about 2.5x1.5 inches. As I said, I think it is a one off and I kept using Copaxone for another couple of years - it worked well for me. The scar does get me some odd looks when I’m on holiday and in a bikini - I’m dying for someone to ask me about it; hubby and I have come up with some outrageous explanations! LOL! Btw, I only came off Copaxone because I started a nasty relapse after 4 years of doing well and my neuro decided it wasn’t working for me any more. I would have been happy to stay on it. Karen x

Hi Charlotte,

I started Copaxone 5 weeks ago, mainly due to the fact that I didn’t want any flu-type side effects as I work full time. So far, I can honestly say that apart from a few odd site reactions (red, blotchy skin with a few white bumps), I’ve not really had any problems. I manually inject and just get the stinging sensation after I inject and as mentioned above, the red blotchy bits. A bit of E45 cream helps with the stinging & itching. I find it all very normal and part of my daily routine now.

The MS Decisions website is very good though as it lists all the side effects.

Good luck with your decision.

Sarah

I’m on Copaxone since December 2012 so I’m starting into my 4th month. So far, so good.
I chose Copaxone because I am a single parent with a full time job and didn’t want to risk feeling unwell with the other DMDs. I have the occasional site reaction when I inject, the odd bruise or blotch but nothing major.

I get a small sting for a few minutes after injecting and then it rarely bothers me again. The bruising only happens when I inject in a blood vessel but it’s not sore.

The daily aspect of it is a bit annoying but again, no big deal.

Thanks everyone for your comments I am myself unsure why my doctor is taking me off 1 treatment because of reactions and onto another which also causes skin reactions. I will have a look at the website as a few people have mentioned it. I suppose its all about trial and error with all the treatments see which works best for you. Fingers crossed this 1 is good for me :slight_smile: C xxx

Hello,

Im on avonex, which gives no site reactions. Thats because its an intramuscular injection, the needle is a bit longer. But you take the full weeks dose in one go, maybe making side-effects worse in some.

But i have spoke to many on copaxone and some have got on really well with it. I can see the benefit of jabbing daily, would have been so much quicker to get used too.

The ms decisions site is missing a few of the different auto injectors, so it pays to search for them and ask your ms nurse.

Goodluck

Darren

P.S. direct link to msdecisions:

Thanks everyone for your comments I am myself unsure why my doctor is taking me off 1 treatment because of reactions and onto another which also causes skin reactions. I will have a look at the website as a few people have mentioned it. I suppose its all about trial and error with all the treatments see which works best for you. Fingers crossed this 1 is good for me :slight_smile: C xxx

Hi everyone I’ve been doing a bit of research on this treatment and all seems ok except for Lipoatrophy which scares the hell out of me. Has anyone experienced this with the treatment? Char xx