Last reply 6 months ago
Second relapse

Iv just had my second relapse in 10 years. I was diagnosed 10 years ago with RRMS and 3 weeks ago woke up to numb feeling all down my righ side. They gave me a MRI that confirmed a relapse and treated me with 5 days of steroids in hospital. It came on so fast luckily I have all feeling back but getting really bad headaches 😢. Hope I last another 10 years relapse free.

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stumbler
6 months ago

Hi @stacey and welcome.

Hopefully those headaches will disappear as your body deals with the steroid hit you’ve just had.

Ten years between relapses isn’t that bad. But, there is still unwanted MS activity going on. Was there any discussion regarding reviewing the Copaxone and replacing it with a more effective treatment?


stacey
6 months ago

Hi, I was on tysybi but it was too strong I tested positive for PML, but because I was relapse free for 10 years they put me on Conpaxone for 3 years it worked well then out of nowhere this relapse happened.


stumbler
6 months ago

@stacey , it was the level of your JCV antibodies, which probably led to the Tysabri review, not the strength of the treatment.

The Copaxone was a step backwards in effectiveness. There are now a few more options to consider, which may be more suitable.

It might be worth asking the question.


stacey
6 months ago

I don’t want to go back on tysabri because I work full time and it’s a pain going in and out of hospital. I wouldn’t mind trying other options tho but I don’t know any other treatments.


stumbler
6 months ago

@stacey , there are now more effective treatments, which are either oral or infusion,required at varying intervals. The following has details of all the treatments :-

https://support.mstrust.org.uk/file/DMD-Book-Final-WEB.pdf

And here is a Decision Aid, which you might find more direct:-

https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid


stacey
6 months ago

Thank you for the information 😁.

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