Ive posted a few times on here in the past, however haven't done so in a while. I'll post this message elsewhere on this forum as well, just so that the message gets out. In a nutshell, I've had a torrid time. My first attempt at TSW lasted 10 months before I was hospitalised with sepsis. So I caved in and returned to using moderate TS twice a week all over my body (as I had been doing for the last ten years). I did this for a few months whilst on mycophenolate. I didnt improve much and contracted shingles, so I quit the immunos. This was around March 2016 when I decided to give tapering TSC a go. I tapered from Betnovate RD to Eumovate, and this seemed to work. I managed to go March - August (5 months) without any TCS but last week had a massive full body flare, which I just couldnt tolerare and I had to go back TS. I have to work and raise a young baby so severe TSW where I am bed ridden with full body soreness is just not an option. I think that infection was the cause of the recent flare - I seem to be easily infected and the problem I have is that without any TCS, the staph has the opportunity to proliferate and this worsens the inflammation and makes it widespread. TCS either reduces the staph load or ensures that the skin remains intact so as to prevent infection.
So, in summary, I am back on the 2-3 times a week application of moderate TS all over body (I try not to involve the legs, but they remain in a bad state as a result. Funny I can cope with my legs being bad but anything on my torso and back I just cant tolerate clothing). I do believe in TSW however there are also other complicating (if not driving ) factors in my case. For me, cessation of TCS will not work alone - there has to be something to help the sking getting inflamed and leading to infection / full body flares. I've tried everything including sea salt, hibiscrub, sudacrem, ACV etc etc - nothing works.
I now have the option of Methotrexate which I am hesitant to go with because its very hard on the liver - (add a combination of a powerful hepatoxin to moderate alcohol consumption and all the prescription drugs ive taken antihistamines, antibiotics, imuran, cyclosporin and it makes me worried about liver damage.
Im therefore at a position where TSW does not appear to be a feasible option. I will try to taper once again to a TCS strength that does the least damage possible and I am waiting in hope for the next generation of biologics to save me- I'm not sure when these will be available or whether they will work. At the moment, I have to accept that TSW isnt possible and that in order to function, I have to carry on with the TS.