Forum

Flare ups

Hi

Im relatively new to forums but i wanted to ask some questions please.I have Relapsing remitting MS afetr being diagnosed in 2017 i take tacifera, im getting used to trying to understand the condition as best i can but I am also aware this is a very individual disease for every one so i find this really hard to relate to people with varying synptoms.I had quite a major replase originally in 2016 effecting my brain stem. I am wanting to know that if you have a flare up of symptoms cpuld this be classed as a relapse? or is this just the progression of the disease and its symptoms? I have been told about significant changes that would indicate a relapse so im expecting it to be similar to teh last one??

Thanks

Hi would just like to ask if anybody that has been diagnosed if their blood results showed a high ck level over 1000?

Hello Claire

The word ‘flare’ is (to me at least) misleading. It seems mostly to be used instead of the word ‘relapse’.

You could of course have ongoing symptoms that are the result of previous relapses that have not totally remitted, but to call these a flare up doesn’t seem quite right, they are simply bloody irritating symptoms.

A relapse can be a repeat of previous symptoms (that has come about at least a month after the last time you experienced these symptoms), or something completely new to you.

So if you have new symptoms, that would possibly be a relapse, and you could contact your MS nurse and see if you could get some steroids (so long as you are certain that you don’t have a UTI as sometimes these can cause weakness and odd symptoms that seem like a relapse - steroids would make the UTI a lot worse, so get your wee checked every time before starting steroids).

If you are having relapses even though you are taking Tecfidera, it might be a good thing to talk to your MS nurse and/or neurologist about possibly changing your disease modifying drug (DMD). There might be a more effective drug that you could take. You don’t want more brain stem relapses if you can avoid them.

Sue