Diagnosed July 29th and apart from one 5 day course of 500mg steroids I’ve had nothing, and I’ve been struggling. Getting to the stage where I will try anything they offer me. Got rejected for a trial cos those drugs wouldn’t be strong enough for what’s going on with me. Got relapsing remittance type, with new lesions all the time (seemingly!). So consultant nuero says he wants to start me on some newer drug, that’s only just becoming available, but still not til January/February. In the interim more 500mg steroids, but this time for two days a month, for 3 months - “to keep it from getting worse” And so here it comes again with the steroids INTENSE hunger (which I am not used to), frustrating lack of ability to sleep. Haha, also the one I’m waiting for is transfusions for 5 days at a time, which I will have to stay in hospital for (sob). I know I can bring some comforts of home, but I can’t bring my bed! Anyways, I see massively how this looks all like rah, but I don’t feel stressed over it. Just some frustration, and lots of like, oh that sucks. Never mind. Crack on
when you say transfusions, do you mean intra venous steroids?
my local hospital does these as a day patient but i chose to stay in because i wasnt driving at the time.
hope they make you feel a bit better.
Lemtrada, would that be? That sounds like a brilliant drug. I hope that you get on it soon. It is so frustrating to have to wait, but I suppose the consolation is that, if you had needed it this time last year, it wouldn’t have been available at all!
Fingers crossed that everything stays quiet for you until the Lemtrada gets to work. From what I hear, it is one of those drugs that can really stop MS in its tracks.
Meant to say - there are over-the-counter sleep aids that can help with the steroid jitters. Nytol, Sominex and suchlike. Or you could ask your GP for a few prescription sleeping pills ot help you through steroid nights. GPs get the bends at the thought of people becoming dependent on them, as I am sure you know, but this kind of occasional special circumstance is the kind of thing they’re made for, so if you have a friendly GP that might be something to ask about.