I took this information from The Barts & London blog and thought it was worth reproducing here. The words of Professor Giovannoni are often worth reading.
I don’t think this is a new revelation.
Steroids, like all drugs, have risks and benefits. There is a reason there’s a limit to how many courses you can have.
Personally, I have never sought steroids. I’m not saying I never would, but I’d only consider it for severely disabling relapses, such as if I couldn’t walk, or couldn’t see. I think this is pretty much in line with the policy of my local neuro team anyway. I’ve seen a presentation drafted by one of them, in which she makes clear she does not recommend steroids unless the case for them is very strong - i.e. not all the time, for every relapse.
Yet another reason for me to refuse the steroids - I’ve had them 4 or 5 times and they’ve only worked once, so I’ve decided that I won’t take them again. They make me feel rotten, and I’ve found that I actually prefer just to ride out the relapse than take the steroids. I know that they work for some people, and some people do not have the side effects that I experience though, so this will be bad news for them.
When are they going to give us a proper treatment?
This sounds frightening Whammel. After my last bone test I was told that these were “considerably worse” than the last one, but what can we do?
Just as well we’re not paranoid, eh?