Hello Coco
I don’t think there’s any need to apologise, sometimes threads go off at a tangent as people want to ask about aspects mentioned in the original post.
Re steroids, there are a few points.
First, their effectiveness is completely unreliable. And can be different each time. So maybe the first time you have steroids for a relapse, they work brilliantly. That doesn’t mean they will the next time, or everytime, or even ever again.
The point of steroids is not to cure a relapse, but to speed up the recovery time.
Then, they work best when you have just started the relapse. So taking them weeks or months in won’t help. (Almost definitely!) I’ve taken steroids on day one of a relapse (after checking I have no UTI - see my comments later). This relapse happened to begin on the day of an MRI so it flashed up bright and clear. The steroids worked almost immediately and I had complete remission. A perfect example of when steroids work brilliantly.
The side effects from steroids aren’t pleasant though. Ever. The metallic taste in your mouth never goes away, no matter how often you’ve taken steroids, each time the foul taste returns. Nibbling extra strong mints helps. A bit. After you’ve finished the steroids there’s a reaction, I’ve often likened it to 10 rounds in a boxing ring with a heavyweight, or being kicked all over by a donkey. The other thing they do is make you edgy, almost ‘speedy’, sleepless, narky, argumentative (there’s a warning on the label about psychosis!). So don’t row with your OH when taking steroids. Especially not if you are carving the sunday dinner!
You must be certain you don’t have an infection before starting steroids. Taking steroids with a virus (even a cold) or infection makes the bugs in your system go bananas. If you take them with a UTI you could go bananas!! I had IV steroids with a streaming cold once (not for a relapse - for hives that made my eyes swell shut!) The cold turned completely horrible. For ages.
In short, steroids (generally a drug called methylprednisolone - aka prednisone in the US) are sometimes miracle workers. More often, they might speed up relapse recovery, but it’s difficult to tell because relapses can take so *#¥€^ long to recover from. They have some nasty side effects.
Personally I’ve always believed that if you catch a relapse early enough, and it’s a relapse that affects either eye sight or motor function, then it’s worth taking steroids. But if you don’t start them in the same week or two as the relapse start date, then don’t try. Or if the relapse is sensory but not major, then I’d leave them alone.
Have a look at Steroids (methylprednisolone) | MS Trust
Sue