I have just been dx with MS and offered treatment with either copsxone rebif, interferon or avonex. I have chosen copaxone because it has fewer side effects, and am waiting for it to arrive but really nervous about having to inject. Also does it really work? I still can’t believe I have MS.
I started on Avonex about a year ago and it appears to have been working according to my Neurologist as my last MRI showed some improvement over the previous one. I have come off Avonex due to side effects- really bad headaches and have been on Copaxone for two weeks now. The injecting is fairly easy, I tend to use the auto inject device which makes it easier. I get what feels like a wasp sting which lasts upto about half an hour but is definitely better than the Avonex headache which lasted for 24 - 36 hours.You should be offered some training from your MS Nurse.
It takes some time to get used to the changes in our lives, there is help and the forum is as good a place as any for advice and support .
Take care and keep s’myelin
Kaz
Hiya I started copaxone in May.
It was the only one for me side effect wise. The injecting is easy and the nurse will show you how to do it manually and with the autoject.
I use a mixture of manual where I can reach and autoject where I cant.The nurse also taught my hubby and daughter how to do it for if I’m ill and difficult to reach places,which I think is a good idea.
I injection going in you honestly can’t feel as the needle is so fine.After a few minutes it may or may not feel like a bee sting.
I do still get red itchy lumps which come up again when I’m hot but I am now taking an antihistimine tablet to help,and have just started using the freeze pack they send you,and as soon as it cools down it stops itching. So 3mnths on I am still learning.
Doing the injection becomes second nature very quickly and because you can leave it out of the fridge for a month its easily moveable if you go away.
When I put my weeks supply of tablets up I put a weeks supply of injections in the bag that comes with them so I have always got them to hand and already warm.
I’m sorry you have a dx that means you need them,but you will be fine with it,and as you know there is an army of support and help on here.
Pip
I have been on Capoxone for about 4 months following a bad reaction to interferons. When I first started I had bad site reactions to Capaxone (welts 10cms long which lasted for days). But I am now I’m getting less reactions (still get red lumps), I found that antihistamines helped and I always use an ice pack as I find I get quite a sting/dead leg type feeling otherwise.
You really can’t feel the needle going in. The injections will become part of your routine very quickly. I choose not to use the auto inject pen as I just don’t get on with me and my husband does my hard-to-reach sites.
So sorry that you’re havingto make this part of your routine but it will quickly just become that, a part of your routine. I do the same as pip-when I rack up my weeks supply of tablets into boxes I take a week’s worth of injections out of the fridge.
Your MS nurse will train you how to do the jabs and there is loads of info that comes with your first pack (and storage things for travel etc).
TLF
I have been on Capoxone for about 4 months following a bad reaction to interferons. When I first started I had bad site reactions to Capaxone (welts 10cms long which lasted for days). But I am now I’m getting less reactions (still get red lumps), I found that antihistamines helped and I always use an ice pack as I find I get quite a sting/dead leg type feeling otherwise.
You really can’t feel the needle going in. The injections will become part of your routine very quickly. I choose not to use the auto inject pen as I just don’t get on with me and my husband does my hard-to-reach sites.
So sorry that you’re havingto make this part of your routine but it will quickly just become that, a part of your routine. I do the same as pip-when I rack up my weeks supply of tablets into boxes I take a week’s worth of injections out of the fridge.
Your MS nurse will train you how to do the jabs and there is loads of info that comes with your first pack (and storage things for travel etc).
TLF
Hi there,
I have been on Copaxone for the grand total of nearly 3 weeks!! I was totally terrified of injections but I chose this dmd as I didn’t want the flu like symptoms which are very common with the betaferons.
The ms liason nurse from Intelligent healthcare solutions is great, really down to earth. She supervised my first injection which she thought I wasn’t going to get the courage up to do as I froze in fear. But you don’t actually feel the needle going in as you think you would, I was expecting terrible pain but you feel a very slight pressure, a stinging and itching immediately after and then if you’re lucky, not much else.
I was so pleased the first week I had such minimal site reaction that I found it hard to locate where I had actually injected. The second week onwards is showing much more site reaction, large red raised area around the injection site and itching. This lasts on me about 3 to 4 days but she said she will send me some cool gel packs to help with the itching.
My leg area was the most painful to inject but after a visit today from the nurse, i’ve been doing it in the wrong area and not sitting right so it’s now much better.
I use the auto inject as I haven’t the courage to do it manually . I prefer to do the injections myself, hubby has assisted me in the hard to reach areas but I don’t feel in control if he’s involved. The nurse went over again how to do the hard areas myself and I think I’ll be ok. Hubby can assist only if I’m not feeling well enough to inject.
I too load up my injection wallet with a weeks worth so that they’re ready to inject without having to worry in case you forget to get one out of the fridge.
As for knowing if it works, I cant say as I’ve only been on it for a short time and unfortunately I have had a relapse since taking it but I’m sure thats nothing to do with the Copaxone, the nurse has made a note of what happened to me and will feed it back to my ms nurse and the pharmacutical company as they have to report everything.
Another tip is to not leave the injection in too long, you should leave it in for about 10 seconds, but me being me decided to leve it in for about 13/14 seconds and this can actually cause some fluid to come back out of the injection site, something to do with build up of pressure.
I know what you mean about not thinking you’ve got ms, I was diagnosed in April and even now I still keep thinking I may not have it, but I guess too many strange things have been happening to my body which I never had a sign of previously so together with the mri results I suppose that I have to accept the diagnosis.
Whatever you decide on, I hope you get on ok with everything.
Anne-Marie
Thanks so much for your replys, it’s all new to me so your advice and reassurance means a lot to me. It seems that most people try avonex or betaferon before moving to Copaxone, so I hope I’ve made the right choice. I’m going to see my ms nurse as soon as the pack arrives and she will show me how to inject. I think I’ll use the auto inject pen as can’t imagine doing it manually but I guess time will tell.
Hi there I have been taking rebif for about 4 yrs and (touch wood) have never experienced any flu like systems, I was advised very early on to inject as close to bed time as possible, therefore sleeping through any symptoms. As for “do they work”? I can honestly say I really think they do, this is my story… ( first time on here so slightly nervous) Had first symptoms when I was 19, I’m now 35, I was luckily diagnosed very quickly. Rrms. In the early years I had Quite a few relapses, some of them very severe. But then it all seemed to calm down. I got to the point where I hadn’t had a relapse or really any symptoms for 5 years. I worked full time in a Physical job up to 60 hrs a week… So surely my ms had gone??? How could anyone with ms do those kind of hrs was my thinking. So… If I forgot to do my injection for a while then surely it wouldn’t matter would it? Well I was VERY wrong, because after 7 months solid of doin 60hrs a wk at work and forgetting to inject I am now having the worst relapse I have ever ever had, my whole body from my neck down is numb, stiff, weak, spasticity, burning, the hug, chest vibrations, pins & needles, this is including my arms and hands. Lasting 7 wks so far. I can’t do a thing for myself, I’m using a wheelchair and commode for the first time ever. So please please take my advise, never forget to inject for long amounts of time, learn from my mistake. You really do get used to it. Hope all goes well once you pack arrives, practice makes perfect. Take care Jo xx Hope all goes well for
I went for Copaxone due to the mimimal after-affects and the daily injection looked to be easy to build into a daily routine. After 15 months, I can say that I have only had two very mild relapses, so it seems to work.
BUT! But, but, but, but … …
Thanks to that {would have inserted an adjective, and it would have been filtered} group of people at NICE, if you choose Copaxone, you cannot go straight to Gilenya/Fingolimod if Copaxone stops working - you must have had some prior exposure to one of the Interferon-based DMDs.
Factor this into your decision.
Geoff
One more thing I would say is…I think it is a good idea to try at least once doing the injection manually because if the very unlikely happened and you lost/broke the autoject you would then maybe have to manually do it when already in a panic
Just a thought. Also I found because the syringes are so small I had problems holding it with stiff hands, so I phoned the helpline and they sent a wingject which gives you something bigger to hold the syringe.Apparently they dont always come in the starter pack but has made life alot easier for me.
Take care
Pip