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8 days into Copaxone

Hi anyone out there.

I started Copaxone last week and was warned it would typically hurt like a bee sting. More like a swarm of hornets, last night I injected into my tummy and I felt like I’d been stabbed between the ribs, I did inject into the stomach as directed, nowhere near my ribs but it seemed the pain spread upwards, I could not move for about 3 hours, such excruciating pain ! The day before I injected in to my thigh and now have a nice itchy lumpy bruise. I’m using the autoinjector, have had it set to 12, am reducing to 10 tonight in hope that it will make a difference. I have tried calling Neurodirect (This is the MS nurse department in my hospital) but a voice message tells me they are closed so I don’t really know who else I should ask. Could anyone share with me their experiences of early use of Copaxone, I’m praying it starts to get better. Sorry if you think I’m being a wuss.

you are not being a wuss. it sounds bloody horrible.

why are you not taking tecfidera instead (the no needle alternative)?

Hi Peni

When I was on Copaxone I got rid of the auto-injector. Bloody horrible that thing is. It is just too harsh with the needle. I opted to do them manually and found that much better with very little to no pain. Also I made sure not to go too deep, just under the surface and well away from any muscle. My sites were top of bum, hips, tummy and back of arms.

Try manually and see how it goes. Tis really easy after you have done it a couple of times and a much more pleasant experience :slight_smile:

oh and thighs…

When I used Copaxone I avoided the auto injector too. It’s very easy to self inject and I never had any problems with injection site reactions.

Although Paulo is right, Tecfidera is a better no-needle alternative. The trouble is that once you’ve started on a DMD (in the UK), you have to give it a good go and ‘fail’ on it, ie continue relapsing or have other problems. Only then can you swap. So if you continue to have trouble with Copaxone, and some people do have nasty ISRs regardless of injection method, you can easily argue a good case to swap to an oral therapy.

Sue

Hi Peni, I’m on Copaxone, have been for 9 years, they are going to stop it soon though as I have been “upgraded” to SPMS. I still struggle to be honest, I don’t do my stomach, your right the pain is incredible must admit I have lost a lot of muscle tissue to it, looks like dents in various places, they haven’t offered anything else & they wont now, if I were you, I’d certainly ask if there is an alternative, wish I had!!! I dread the injection to be honest, so in my case, sorry to say, you get used to the pain, but it doesn’t make it easier! I’ve also got sore injection sites, quite bad at times, have told them, but like I said they wont change them now, sorry to sound such a misery, but it’s not pleasant, ask for something else is my advice! Good luck Tracey x

i hate the situation the people of the UK appear to be in.

you pay your tax contributions to fund the NHS system. it is therefore no stretch at all, to say that you are NHS clients / customers.

the requirement for you to justify a reason to change your drug prescription beyond a simple expression of preference, i think is nothing short of brutal bullshit.

it should be upon the consultants to justify why you should not change; and even then, you still reserve the right to a final decision.

we live in an enlightened age of information; the internet grants insight to new therapies and the results of ground breaking new studies and innovations.

as a copaxone user, i would be pissed off that i was expected to suffer the administration of an inferior product, when it has become common knowledge that a more effective and easily more tolerable alternative was already available.

i am not surprised that a system which tolerates the ‘limbo land’ environment as being reasonable, is also mired in such backwards logic. but with that said, it still disgusts me.

I count my Canadian blessings and i have no end of sympathy for those having to fight so hard to get help from those supposedly there to help!

sorry. rant over.

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Ssssue I think you need to get a different neurologist. I live in the UK too and have no problems being able to change to my desired treatment as long as my neurologist agrees that it is the best option for me.

Hiya

I really struggled when I first started Copaxone. Horrible pain and really bad site reactions. I ended up taking a 1-a-day antihistamine for about 3 months, until my body got used to it. I also inject manually as the auto injector makes me jump and pull the needle out too soon (even though they’ve just brought a new one out, it’s no better).

In the end for me the pain was so bad that I would end up in tears after almost every injection. I ended up getting Emla cream from my GP. It’s the stuff they use in hospitals to numb the skin before injecting or putting venflon/canulas in. You need the little clear plaster things as well and just put a dot of cream on the injection site, cover with the plaster and leave for about an hour. The just inject as you normally would. I stopped using it about the same time as I stopped the anithistamines. I would still get the pain every now and again (and still do) but find that a cold pack works for that (although they say use a warm pack as cold doesn’t/shouldn’t help).

I’m glad I stuck with it as it really works for me. It just takes a bit of perseverance and working out the best way to do it for you.

Sue

Hi everyone that posted back to me.

I am so thankful to you all for your comments, I feel like I’m not alone anymore :slight_smile:

I managed to get hold of a nurse from connections (I think they are a service run just for people who take copaxone) anyway, he told me to reduce my autoinjector to 8, squeeze wherever Im going to inject to get a bit of fat to inject in to and support the bottom part of the autoinjector when Im lining up the arrows so as not to put pressure on my skin, so me and my husband fingers crossed have seemed to have gotten this right so far, its still stinging, more like a baby bee and just for 15 minutes so its helped me, bear in mind this is my 10th day and so in 6 months when Im full of holes and lumps, I suspect I won’t sound so positive as I do today !

I cant even contemplate at the moment putting the injection in without the autoinjector as a couple of you have advised. The thought of being able to see the needle gives me the willies, pathetic I know but I am so needlephobic, maybe one day I will get over it :slight_smile:

Anyway, just wanted to say thanks to each and everyone of you, lets hope and pray that one day they will find something that will help us all, that doesn’t sting, that doesn’t incorporate needles and that makes us all revert back to how we used to be, able to run, able to dance, able to walk without looking like you’ve had a bottle of red wine or 5. Fingers crossed guys, praying for a miracle. x

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