Copaxone

Hi there,

Hope everyone is doing well.

I’m not on any DMDs at the moment but am thinking of Copaxone. I’m keen to hear from anyone else who is using Copaxone and how you find it?? Do you have many side effects and does the injection really sting…I’m a wuss when it comes to needles ??

Many thanks
MAKS
x

hi maks

i’ve been on copaxone for 4 years.

i use the autoject so that i don’t have to handle the actual needle.

it doesnt sting any more and if it does i’ve heard of people taking antihistamines to stop this.

top tip - keep your skin in good condition, moisturise but not immediately before injecting

if you do have any problems the connection helpline is great, run by copaxone nurses who are very helpful.

good luck

carole x

Hello :slight_smile:

I have been on Capaxone since last May and my experiance has been very positive :slight_smile: My fatigue is a thousand times better and

I have only had one relapse and it’s nearly been a year normally I have 3/4 relapse’s a year. Getting used to the injections

didn’t take long & for me finding a quiet chilled time to do it has made all the difference. The sting isn’t that bad I am also a wuss

& for me the benefits outway the slight discomfort that only last’s a short time anyway. Wishing you all the luck in the world

Sam x x

Hiya Maks

A few tips for you to help with the sting (if it happens).

Keep your skin in good condition, the needle goes in much easier.

Make sure the injection is body temp before doing it.

Use a cold pack straight after the injection.

Don’t rub the injection areas after doing it but massage it well the next day(s).

If it stings a lot or you have really bad site reactions, take a 1-a-day antihistamine for a few weeks, just until you body gets more used to it.

I really struggled at the start but by doing these things it soon settled down. I still get the odd sting after injecting (legs usually) so keep the cold pack in the freezer just in case. Glad I stuck with it though as it seems to be working.

Sue

My advice is do the injection at a time when you are busy. I used to take mine in the evening but then I was very aware of the itching and stinging because it was before bed. So I switched and I now take it in the morning just before I leave for work. With school drop off and getting to work, I’m too busy to pay much heed to the stinging.

Some days are worse than others but it’s never been intolerable for me. I’ve been on it since December 2012 so I’m relatively new to it. I don’t use the auto-inject and I agree that having the injection at room temp is important. I get the odd bruise but I don’t bother with cold packs etc. I did at the start but they made no difference for me.

It’s they type of thing where people find their own way of doing it and what works for one may not work for another.

I can’t say if Copaxone is working for me yet, only time will answer that question.

Hi MAKS,

I started copaxone in September 12 so about 6 months ago now and am finding it ok. I was previously on Rebif but couldn’t tolerate the side effects of headache with that. I use the auto injector pen and it is very easy to use. The injections do sting but are getting better and the sting sensation usually only lasts a few minutes. At first they injection sites felt itchy especially if I was hot but this has eased considerably. I used an anti itch cream from Boots to help and others take anti histimines for this too. I use an icepack that the medication company send which helps dull the ache. I moisturise my skin every day.

Otherwise I have had no other side effects and I feel fine on it. The copaxone nurse is brill, she has been out to see me 3 times now and is due to come again in a month. She also liases with my MS nurse. The delivery company who delivers the copaxone are also very good.

Hope this helps

Cathy

Hi,

I’ve been on copaxone for 6 years! Yes it was difficult at first, but stick with it and your body will adapt.

Some good advice above, FYI I inject in the evening before bed, I found that injecting after morning shower when body still warm caused a greater reaction and was difficult before going to work.

However, stick with it and you will find your own way.

I’ve been on copaxone since October 2011.

I use the autoinjector seeing the neddle going into my skin did freek me out so now I only see the neddle as its being put into the sharps box.

If y oo u do get put onto copaxone you will get a started pack where younget everything you need, they even send a cool bag and rucksack which is hreat for going on holiday with, you will even get a mini sarps box for holidays it it holds two weeks worth of injections

It does at times sting for about 30 minutes, when that happens I get the Ice pack out of the freezer, then after 30 minutes I go to bed, my MS nurse told me to never to use an injection when I’m by myself just incase I get a reaction which has never happened fingers crossed.

I tend to do it in my things or in bottom of my belly, I feel I’m hellping to control my MS and not expecting anyone else to do it for me. It’s one thing I can do for myself,

I do get lumps where I inject but they do not hurt, I only have to make sure I dont inject into a lump or scar

Im still getting relapses but they are short to what they used to be, now days and not months like they used to be like.

Al x

I have been using it for 4 years. I dont use the autoject and I inject just before I go to bed. It doesnt bother me at all any more. Who knows if it does any good? The only way to find that out would be to stop taking it so it’s a vicious circle really. I think Copaxone is supposed to be the least toxic of all the DMTs and also the best tolerated. Good luck with it :slight_smile:

Auto inject for me! Learnt the hard way, never do your injection straight after a shower as the skin is too sensitive! As others say, massage and moisturise the skin on the parts not being injected that day. Injection early evening then sit and chill for at least half an hour post this. By the following morning all is well (apart from occaisional itch). Been on it now for 12 months.

Do not overdo the excersize or diet as you lose your fat reserves! The injection ends up going into muscle instead!

Hi I’m really skinny, trying to put on weight all the time. Would this DMD suit me if I’ve little fat. Thanks

Zoe, it’s certainly easier to inject if you can pinch a few inches of fat to stick the needle in. Maybe a copaxone nurse could help you find sites that would suit your body shape?

Thanks for all the great advice, really appreciate it. I’m due for a catch up with my neuro in a few months so I’ll talk about taking the next step for DMDs.

Thanks again, really appreciate it guys and hope you’re all as well as can be expected.