Hi all I’m considering going onto copaxone, I was on rebuff but had some very nasty side effects, my nurse sent me the copaxone DVD but it dosent really tell me much about side effects, has anyone been on this drug and have you had problems with it, any information would be great Jane
hi jane
i’ve been on copaxone for 4 years, straight after my diagnosis.
i use the autoject because i didnt like the thought of injecting straight from the needle. other people prefer it though. well at least you have the choice.
i havent had any serious side effects.
injection sites can be a problem but there are lots of tips that i’v read on here.
if the injections are painful for you, you could try a numbing cream (ask your gp)
if the skin is sore try bio-oil.
have you had any contact details for connections? they are a service that you can ring with any problems or concerns that you have with copaxone. its really reassuring because they take every call seriously and always follow up.
my neuro gave me some good news. they are going to start offering it as a double dose 3 times a week.
good luck
carole x
Hiya
I wouldn’t swap my copaxone for any of the others out of choice,despite the lumps,bumps and itches.
No mood swings,blood tests,easy to transport if away etc.
My hardest thing is finding places I can inject because stretch marks are a definate no no. That makes most of me out of bounds.
Everytime I get hot many of the old sites become big red and itchy,I am currently waiting to try full strength make you sleepy piriton but since the gp gave me that I haven’t had any reactions at all.
I do a mix of manual and auto injections and I am now finding if I do them deeper there is less reaction. My biggest problem is you do have to massage quite hard any lumps that do form to try and break them up but my hand strength isn’t up to it.
The process of injecting is so quick and easy its untrue as I keep a weeks supply out of the fridge so you dont have to wait for it to warm up. To me the side effects are minor irritations rather than flu like symptoms or headaches which affect daily living.
All the best
Pip
Hi Jane,
I have been on Copaxone now for about 11 weeks. I was on rebif like you but came off it as It made me feel dreadful and I seemed to be constantly taking painkillers to try and prevent symptoms or help with the awful headaches I used to get with it. I seem to be getting on ok with copaxone. I use the auto injector pen which is fine,although the injections do sting sometimes especially when injecting my thighs-but I use the cool gel pad which helps. I would say the skin site reactions are worse for me with copaxone than with rebif. With rebif I would get red marks which faded but with copaxone I get red marks which get itchy and lumps which form under your skin which you have to massage away as best you can-they do go if you persist. I use an E45 itch relief cream you can buy otc from any chemist and I have been taking an otc anti histimine tablet each day too- but recently have eased off with these. I massage my skin with Boots derma care moisturising lotion and use use bio oil too.
Whilst being on Copaxone I have had no headaches and I generally feel better- the tingling sensations I used to get have been much better too. It is a drag having to inject every day but it soon becomes routine.
Hope this helps
Cathy
Been on Copaxone since June last year.
Chose it on the basis that a daily injection was easier to build into a daily routine. No side effects that I know of. Skin site reactions reduced over the first three months. If you use the injector, there are one or two tricks to make the use easier.
I do not get really bad relapses, but I had three “normal” ones in the six months before starting on it, and only two since (with the last one nine months ago. Gets my vote.
Only down-side is that you cannot go from Copaxone to Gilenya - must have used an interferon-based DMD first, But then, BG-12 is on its way, and no-one knows what conditions NICE will put on that.
Geoff
I saw my nurse last week and both new oral drugs that will hopefully be out there soon you can go straight onto from copaxone,there is no ruling planned that you have to of tried rebif/avonex first.
Pip
Hi Jane
I have been on Copaxone and use the autoinject since August and the only very minor side effect is a little bit of stinging for 10 - 20 minutes after the injection.
Take care
Kaz
Hi Jane,
When i was first diagnosed I started using Rebif and i hated it every minute of it because of the side effects. I changed to copaxone about 5 years ago and it has been great…I dont get the flu like systems, being cold and hot etc…and no mood swings. I had dry skin but nothing that a good cream wouldnt take care of…Unfortunately i have to change again in coming weeks to the oral drug since there has been activity on the latest MRI.
If i knew what i know now, i would have never used rebif but used capaxone.so no bad side effects for me.
hope it goes all well for you too.
C
Hi all Thanks so much for the advice, I’ve been so scared to try anything since the rebif it made me so ill, but reading your comments has made me feel positive about the copaxone, you all sound happy with it, I will get some bio cream, do you get it from the chemist? Thank you again Jane x
Hi all Thanks so much for the advice, I’ve been so scared to try anything since the rebif it made me so ill, but reading your comments has made me feel positive about the copaxone, you all sound happy with it, I will get some bio cream, do you get it from the chemist? Thank you again Jane x
Hi,
I’m on week 9 of copaxone now and agree with a lot of the comments, and certainly have no interest in changing to another DMD, I’m getting on fine with it.
I started using bio oil a few days ago after recomendations here, Boots are selling it on special offer just now, 1/3 off.
Jools
X
Thank you jools, I will get some x
Hiya
Everyone has given you great advice already so I I won’t go on and cover what has already been said. I see lots of people have mentioned Bio Oil. I used it for a while but ended up running out and not getting more because of the cost. I’ve since found that as long as your skin in good condition by using body lotion and massaging the areas you injected really well (the day after you’ve injected that area), the site reactions and lumps and bumps are no different from when I used Bio Oil.
Good Luck with it, it took me a while to get used to but I’m glad I stuck with it (4 years on).
Sue
x