Yes, before I started, I read all about the possible post-injection reaction and while it didn’t look pleasant, it wasn’t (on paper) enough to put me off. But only 6 weeks into injecting copaxone, last night I had the most terrifying reaction. I’m not normally dramatic, but I felt as though I was dying. Stars before my eyes, sick, chest pounding, head felt about to explode. Red face, rash as well. Couldn’t breathe properly or see properly. Most of the effects lasted for 10 minutes, then started to slowly subside. Left very shakey and tearful. Also, over 24 hours later, still have a headache which normal paracetamol and ibuprofen just won’t shift. Planning to ring ms nurse tomorrow, but in meantime too afraid to inject. On my own at home with 2 children and too fearful. I want to change DMDs but have lost confidence in my ability to inject at all (after being more than happy to inject daily). Through all I’ve read it doesn’t look as though I would be considered for oral treatment. Or am I wrong? Any advice gratefully received.
I’ve not experienced this myself but, like you, others have said that it’s really scary There was someone a while back who had it happen more than once, but I think the odds are very low. However I’m not surprised you’re worried about doing another injection - it’s all very well knowing that it’s not harmful, no one would want to go through that more than once Do you think you might be able to have another go if there was someone with you? If not, then I can’t see why they wouldn’t let you switch to an interferon. They don’t cause the post injection reaction so you wouldn’t have to worry about that. I don’t know about Gilenya. I’ve heard that only people who have been on an interferon are eligible, but you could always ask. I hope the headache goes soon! Karen x
Thanks Karen, the headache hasn’t quite gone yet, but it’s on it’s way out, albeit slowly!
I can honestly say that I will never again inject with copaxone-with as much certainty as I will never have another lumbar puncture, but that’s another story!! You’re right, having somebody with me may provide reassurance, but that’s not going to be possible every day. You’re also right in saying that the reaction isn’t harmful. However the anxiety caused by the psychological fear of dreading the injection each day would be very distressing. Combined with the resultant headache, queasiness and ‘possibility’ of something physically harmful (maybe) happening then I would feel like I never had peace of mind!
I’m waiting to hear from my ms nurse about the possibility of switching drug therapy. I wanted to steer clear of the flu like side effects and regular blood tests of other DMDs but will consider anything now. My veins are useless and I always end up looking like a pin cushion to even give the smallest amount! A few years back, having tried and failed to donate blood, I was told, in the nicest possible way, to not bother going back!
In the meantime I’ve been reading more about the introduction of oral therapies for first line use instead of injectables. It’s looking likely that 2013 and onwards will bring more advances. However I can see that nothing is going to happen in a hurry and that cost is likely to play a huge part in deciding who gets these and when. Ah well, onwards and upwards!
Blood tests with the interferons aren’t very often (a couple of times a year max) and a lot of people find the fluey effects are manageable with paracetamol/ibuprofen. I’m one of the unlucky ones and am still taking paracetamol on “Rebif days”, but most people find the side effects wear off within weeks/a few months. Mine are a lot less now though, and it’s been worth it to have had no relapses in 18 months
Hi there, I may be the person that Karen is talking about that has had 3 post injecion reactions in the last 2 months whilst on Copaxone. I had been taking it for nearly 4 months when I had the 1st one, then a week later a 2nd one and finally the 3rd one 2 weeks ago. The 1st one was awful, like yours, I really thought my body was going to explode and it took all my strength to remain calm as I could just breathing slowly with my eyes closed. It passed in 20 mins but boy, did it leave some after effects, I too had a headache which took about 36 hours to fade and I was wheezy and very shaky. The 2nd one was slightly less intense and shorter and the third one shorter still but they really are unpleasant as you know. Unfortunately, what has happened is that I’m positive the reactions have kickstarted breathing problems for me and I’ve had to stop the Copaxone. I’ve been off for two weeks now but my GP has had to give me an inhaler as he thinks I now have asthma which I haven’t had since I was a child ( i’m 49 !! ) I did poorly in my peak flow test and I can’t take any deep breaths at the moment which is a real pain literally. I was lucky that my husband was there when I had these reactions so I understand how anxious you feel. I did have some anxiety about injecting again but I just made sure that I was relaxed before I did it as I know that it’s not great if you are worked up when injecting. I would still be on Copaxone if it wasn’t for these breathing problems which I have associated with the IPIR because I was actually getting on OK with minimal site reaction and I think that the post reactions were not so intense as they were to start with. I could have lived with that if it hadn’t made me feel so crap afterwards. I’ve now got to have an interferon which I’m dreading as I didn’t want to experience flu effects and possible depression feelings as I do have a tendancy to experience some real panicky manic down feelings lately which I’ve never really suffered with as a rule. My ms nurse mentioned that prescribing Gilenya would be a distinct possibility but I have to try an interferon first. Hope you get everything sorted. Take Care
Thanks for replying, sorry I haven’t been on for a couple of days, the headache still hasn’t gone yet, despite my best attempts with the paracetamol (rubbish) and ibuprofen (slightly better). So sorry to hear that you’ve had multiple reactions. That sounds gruelling. You’re braver than me though, I don’t even like looking at the box when I open the fridge door, never mind giving injecting another try. You seem to have been left with a long lasting side effect and I really hope the asthma improves. It’s really unlucky that this has happened for you and meant that you’ve had to come off something you felt was working for you.
I too am not looking forward to the flu like symptoms with the interferon as apart from the IPIR, I thought I had it easy with the copaxone, just some skin reactions which were a nuisance, but I was living with. I’ll definitely ask about tablets, but I don’t know what the criteria are to qualify. I think I’ll probably be on rebif next, but holding out hope for tablets at some point. The thought of regular blood tests were sending my veins quivering into a corner, but it’s good to hear from Karen that they’re not as regular as I’d originally dreaded.
Just when I thought it was safe to answer ‘oh I’m fine thanks’ when anyone asked, now this!
Ok, so this thread has made my mind up for my. I’m going with Rebif. I was told yesterday by the nurse that the blood tests would be done after the first month, third month and then every six months after that. The thought of these IPIR’s really scare me, the Rebif seems to have an effect in also reducing the severity of any relapses, and the rebismart device looks easier to use. I guess I’ll trade the flu like symptoms for the benefits. Still not keen on the diarrhoea though…please someone tell me that they haven’t had any problems in this area ?? !!
Oh I hope this hasn’t influenced you too much. I know copaxone works so well for lots of people. Mine’s a very subjective experience. Having said that, I couldn’t comfortably recommend something that I now wouldn’t touch with a bargepole. As much as I wanted to stay away from rebif, I do now realise that it’s my only option and I’m going to ask to go ahead with it at my clinic appointment on monday. Just something else to get used to in the drive to keep well for as long as possible. It’s been mentioned that it may be necessary to have been on an interferon in order to qualify for an oral treatment at some point in the future, so I’m looking on it as an investment!
Hi lilmissdotty I think your and others experiences helped me make my mind up but I was headed towards Rebif anyway. I read loads of independent research which seems to suggest that, whilst all the DMD’s reduce the amount of relapses, Rebif seems to be the one that also reduces the severity of an attack. Plus, I think it’s really difficult to decide without hearing other people’s experiences. So thanks for sharing. If I had gone for copaxone and had a reaction, I would have been gutted that no-one had warned me !! Xx
There was someone a while back who had it happen more than once, but I think the odds are very low. However I’m not surprised you’re worried about doing another injection - it’s all very well knowing that it’s not harmful, no one would want to go through that more than once 