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New about to start copaxone

Hi everyone, I’m quite new to this and would appreciate your help. I was diagnosed in November2011 and started rebif in April 2012. I had four relapses on the drug compared to 7 the previous year so it seemed to be ok until I had an allergic reaction in January this year. I came off the rebif and then had two relapses in quick succession…yuk! Anyway my delivery of copaxone is tomorrow and I am feeling a bit anxious about it, can anyone advise me on copaxone tips. Anything I need to buy in, in advance or anything I need to be aware of? I’m waiting to see the immunologist who wants to test me against both interferon and copaxone (hoping that test comes before my first injection). Really grateful for any advice or help. Many thanks and be well. X

hi martha

you’ll be fine with copaxone. i’ve been on it since 2009 and although i have aches and pains (to be expected at my age) i’m doing ok on it.

have you got the holdall with all the information? dvd etc?

has your ms nurse shown you how to inject?

if you are stuck you can ring the connections helpline and speak to one of the copaxone nurses.

they are very knowledgeable and will even come out to you to show you what to do.

make sure your skin is in good condition - double base gel is great

have some anti histamines handy in case you get bad reactions on the injection sites

good luck

carole x

Thanks Carole, I haven’t got anything yet just the info pack given to me a while ago, I’ll dig that out. Hoping my ms nurse will come out this week to go through it all, I got used to the ease of the rebismart…is the auto injector easy to get used to. With rebif I had to take ibuprofen before injection and paracetamol for flu, do you take anything before your jab, or just antihistamine when you have a reaction. Thanks for putting my mind at ease. X

Hi Martha

I changed from Rebif to Copaxone too, a few years ago now. When I first started Copaxone I struggled a bit with it as I had really bad site reactions which caused pain straight after injecting. The site reactions would last a few weeks so I would run out of places to inject quite quickly. I tried the auto injector but I’m more comfortable injecting manually as the noise of the auto injector makes me jump and pull the needle out too quick (I’m a wuss!). I was used to injecting Rebif manually too as I had the same problem with the old auto injector with that (it was before Rebismart came along). The reactions and pain were the same whichever way I injected.

It seemed that I was a bit allergic to Copaxone, hence the site reactions and pain. I dealt with it by taking a 1-a-day antihistamine and using a cold pack after injecting. Once my body had got used to it I was able to to stop with the antihistamines and would just used cold pack as and when needed. I’m glad I stuck with it as it works well for me and keeps my relapses few and far between and I don’t get any reactions now.

My neuro and MS nurse said that the reactions I was having were not the norm at all, so please don’t think that you’ll be the same. I’ve never had the reaction that they warn you about (fast heartbeat etc).

You will only know how it will be for you when you start so try not to worry too much now.

Sue

x

I had no problems with Copaxone (I was on it for 4 years before switching to Rebif). I always injected manually though because I didn’t like the autoinjector and, unless they have changed it dramatically since then (2011), you will be sadly disappointed with it versus the Rebismart :frowning:

Copaxone works differently to interferon and doesn’t cause any flu symptoms at all so no need for paracetamol or ibuprofen.

The needles are thicker than Rebif needles and the injections can cause the odd lump and bump that I’ve never had with Rebif, but you might be luckier than me.

One tip: never inject it cold - it stings like a *****! It’s fine out of the fridge for up to 30 days, but I used to just take a strip of 7 up to my bedroom each Sunday so there was always at least one ready to inject. I used to inject every morning as part of my getting up routine and it was all really easy. Doing it in the morning also gave me plenty of time to remember if I’d forgotten!

The msdecisions website should give info on all the possible side effects so it’s worth looking on there.

I hope it works really well for you :slight_smile:

Karen x

Personally, I use the auto-injecter (since March 2013) but toying with the idea of dropping it for manual injection. How do you judge how deep to inject though?

Hi Martha,

I also changed from rebif to Copaxone and have been on it now since last September. As the others have said you don’t need to take any paracetemol/ibuprofen before injecting. I use the auto injector pen which is very easy to use. I have found that the injection stings more than the rebif but it is not unbearable and I found that injecting my thighs is more painful but it is getting better. I also keep 2 weeks supply of injections out of the fridge-you are given a special pouch thing to keep them in and before loading the injector pen I warm up the cartridge by placing it under my armpit for 10 mins. This tip was given to me by the nurse and it causes less pain. To help with the sting when I first started on the drug I placed a cold gel pad on the injection site which helped. I also took an antihistimine to help with initial itching but that didn’t last long for me. I also get lumps under the skin wher I inject but find that by massaging them the day after they do vanish. I use a daily moisturising lotion from Boots to massage my skin.

I’m sure you will be fine, I feel better on copaxone than I did on rebif.

Pm me if you need to know anything else.

Cathy x

I have been on copaxons for 3mth all going fine I have no problem injecting with the pen… But my feet feel like they been in ice for a week don’t no if its a relapse or not?

Thanks all, feeling more reassured having heard your comments. I guess it’s a case of finding what works best for me, although I think the rebismart was great for ease. Due to the allergic reaction they’ve squeezed me in for an allergy test Friday against both the copaxone and rebif. So i should start the following week. I will let you know how it goes. Cathy hoping youre right and I feel better on it than rebif. Sue and Karen really grateful for your advice. Valley boy I get cold feet come and go…who knows is it relapse or part and parcel of this weird disease. I got l’hermittes over Easter ooh that’s a weird one! Keep well all. Many thanks.