Starting new MS drug

Caring for someone with MS
1

Hi,

My sister has recently started a new MS drug called Capaxone, and my sister had deteriorated massively since taking this drug (fatigued, cant walk anymore, constant neck pain, incontinent). Just wondered if anyone else has heard of this Drug and if they know of anyone whose on this drug?

Also of any support that is available? She is currently living at home with me and my parents but its starting to become overwhelming with the amount of care and support she needs.

Thanks

2

Hello Kim

That is a very extreme reaction to Copaxone. It seems an unusual occurrence. The normal side effects from Copaxone are listed in the manufacturers leaflet about the drug: https://www.medicines.org.uk/emc/files/pil.183.pdf In particular look at the potential side effects of the drug.

It’s possible that the symptoms your sister is experiencing don’t come from the drug, but instead could be from a new relapse or some other cause. Or perhaps they do come from the drug???

It’s difficult to answer as I’ve taken Copaxone, but the only bad side effect I’ve had was injection site reactions - ie big bruises. It didn’t make my MS symptoms worse.

Maybe she could contact her MS nurse, or neurologist (via his/her secretary - phone the hospital and ask for Dr Whoever’s Secretary)? Or she/you could phone her GP and talk about what’s happening. If she gets very much worse, call 111 and talk to the person who answers about what’s going on with your sister. Be prepared to answer a whole load of seemingly unrelated and pointless questions (these are bound to include a whole load of Covid questions). Eventually you should get to speak to a doctor.

Sue

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Hi Kim, Sue has offered really good advice and I would say do speak to your MS nurse/try to get to see your neuro.

Sounds as if Copaxone isnt helping at all.

I hope things improve.

Boudsx

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Hi Sue,

Thanks very much for reaching out, and for your advice. Yeah I have been reading about the side effects, its difficult as she also started a new depressant drug called Aripiprazole and its knowing which one is causing more of the issue.

We have reached out to the MS nurses who have now advised to stop taking the Capaxone and hopefully start her on another drug. I think shes having a major relapse due to the fact shes deteriorated so much the past few days to not evening walking, or feeding herself. But its down to the consultant to either see her or potentially have another MRI to see weather there are any new lesions.

I’ve been in contact with her GP to discuss everything, its just all such a slow process. Its just good to hear how other patients have responded to the drug and their views, so thanks again for your time :slight_smile:

Kim