I'm just enjoying what I've taken to calling my "rental skin"...I'm still on oral steroids, prednisalone though i'm reducing quite quickly so I shouldn't be for much longer. I'm still taking the cyclosporine too, obviously it's sort of hard to tell whether it's working or not because I'm still on the pred, I suppose the real test will come when I come off it altogether.
So I'll give you a little skin update from the last couple of weeks...
I came out of hospital and the pred healed everything up, I was totally smooth-skinned for the first time in my entire life! It was amazing. That lasted about a week and then I started to notice some symptoms again. My chest and neck were burning hot and itchy and bright bright red. I was really upset, I thought I couldnt possibly be getting TSW symptoms so early while I was still on the pred, but then I realised that what had changed was I had finished my antibiotics to treat the staph infection I had while in hospital. My skin smelled really metalic and horrible when I itched it like it had when I was admitted. So I went back to the doctors straight away, while trying not to get upset that my amazing rental skin had only lasted a week. Anyway, he's prescribed me some more clarithomycin antibiotics to hopefully blast the last of the staph infection away. I've been reading around though and I know that lots of people who have been through TSW find that they stop to work after a while to treat the staph so I'm really wary about when I finish this course. I seem to have responded well to the clarithomycin anyway, I'm not red or burning anymore, just a bit dry again which I'm hoping will subside...
I've had a couple of funny symptoms which I didn't expect, I think probably from the cyclo maybe. I get REALLY cold hands and feet in the evenings and when they finally warm up it takes them a long time so they feel stingy and burny for a while which is weird. But I got my BP checked the other day and it's all normal so that's good. I dunno, maybe just one of those things!
So anyway there we are! Emotionally things are so much better, I can go to work and out with friends without letting my skin hold me back which is amazing. But it's always in the back of my mind that I don't want things to change when I finish the pred... it's hard to enjoy it, which is why I'm just making the most of my "rental skin" while I can!
Hope everyone's journey is going well, always thinking of you all