@rosiep 

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rosiep

Do steroids ever not work?

I’m in the middle of a relapse that is quite badly affecting my hands - numbness, stiffness, and pain that is making it very hard to work or cook or do anything for myself. I’ve just finished a 5-day course of steroids. Last time I took them they started working before I’d even finished the course, but this time I’ve not noticed any positive change - if anything my symptoms seem to be getting worse. Do steroids ever not work to speed up recovery? I’ve just moved to a new area and am between nurses at the moment (great timing!) so can’t really ask advice from the usual places.
@Schnecke

@rosiep Sorry to hear. Steroids are magical things, but I share your experience with them not being magical every time. When I had a relapse after having been diagnosed with a bad spell less than 10 weeks earlier, I was given 5 days of intravenous steroids, 1g per day. Same thing both times. As the second episode affected my leg (and the definition of leg eventually ended up quite generously above the liver in the front and the lower edge of the shoulder blade in the back), they gave me straight on another 3 days of 2g steroids/day and then next straight on to ocrelizumab. So yes, the "standard" are 3-5 days of 1g/day steroids. If problems continue to worsen while on steroids, they might consider another course (possibly at double dose), after a break, as steroids continue to act for a while after application. Should that not work, they might do plasmapheresis or immunadsorption. Those are uncommon interventions where blood is filtered, a little like dialysis. They come with further potential unwanted effects. Btw, steroids don't speed up recovery, they are used to stop inflamatatory processes. (= things from getting worse). As you might know, there are also "pseudo" relapses triggered by heat. E.g. body temperature or fever or environmental heat. Maybe the steroids are doing their job, but the heat supersedes their effect? Maybe there is a museum or shopping mall with air-conditioning nearby where you could spend the entire day to see if symptoms improve? Fancy public library with heat controlled archive/collections would do... Anywhere to cool down for a whole day. I'm keeping my fingers crossed! 😊

@lisamarieromy

Didn’t work for me either. Well; they gave me anxiety attacks, so it did something ;) But from what I heard from the neurologist it could take a bit longer to work