Gabapentine/copaxone/breathlessness...other DMD options? Help please

Hi Gosh where to start… After six months of persevering with the side effects of Rebif I was taken off it and ten months ago put on copaxone which, I thought, agreed with me really well. However over past year I have suffered intermittent bouts of breathlessness. Recently this problem has increased. I had a turn at work where I became dizzy, started breathing rapidly and shivering uncontrollably for 20 minutes and then it stopped. My GP has given me an ECG referred me for an ultrasound of my heart and 24 hour heart monitor next week. I have been signed off work til next week as feeling so overwhelmed by breathing issues, ms symptoms, a cold etc. However although initially thinking it was not to do with ms my ms nurse has written to my GP and thinks if these tests come back negative it could be copaxone causing my breathlessness and is keen for me to come off it. Looking into my other meds though gabapentine can also cause breathlessness. My GP gave me ventalin but this has not helped so it is not asthma. My GP asked me to call my ms nurse who is on leave until next week. I was wondering two things. Firstly has anybody else come across this side effect on gabapentine or copaxone? Secondly if I am taken off copaxone what are the processes or options available for other DMDs and what do they involve? Any advice welcome : ) thank you X

I have been on Copaxone for 4 years. It sounds like a reaction I get sometimes. Is it immediately after you have injected? When I get it, the only way I can describe it, is that I think I am going to die! I go bright red in the face, start to shake, just feel awful, I have to lay down at get through it. Usually lasts between 1/2 an hour to an hour. But once it has gone, I feel normal again.

Wendy x

Hi Wendy Thank you for your reply. The episode I had at work was like that yes and apart from being extremely tired I went back to normal so maybe it is the copaxone rather than the gabapentine. However I inject at night so no it wasn’t straight after my injection it was twelve hours later. However since Monday my breathing problems have changed and become more general and persistent when I try and do anything plus past couple of days I have started to feel nauseous too. I didn’t think it was my meds to start with, as I have heard of the symptom you describe and know it is usually after injecting. Now I am not so sure but don’t know which one to try stopping until I speak to my nurse…who is on leave until Tuesday. Getting a bit scared at how these problems have got worse over past week since seeing my GP but also think I might be starting a relapse like my big one two years ago. My neck is burning and the tightening around my ribcage has come back just like before when everything else followed a few weeks later…so reluctant to come off anything without talking to my nurse in case things get worse. Mish x

If it was the Copaxone, I think you would get it straight away. Its really hard, cos you never know with ms do you? I have the ms hug as well. Mine is playing up again at the moment. I find if I go to my GP with anything, he just tells me to ring the MS nurse. I was on Gabapentin for a while, but it didn’t do anything for me. I am on Sativex now, which helps a bit with the pain. Hope you get the help you need this week.

Wendy x