So sorry you are having such a bad time. I have had radiation treatment for PPP on my feet. The programme was a bit different from yours in that I had one treatment on a Friday where they worked out the dose, then three each week for 2 weeks. I feel that I really turned the corner after these sessions but I wasn't taking any other treatments at the time. I had tried PUVA which eventually burnt my feet on even small doses and Acitretin which has left me with permanently dry eyes, and mouth. I had my treatment in Cheshire in England but it sounds very similar to yours though the sessions were at different intervals. I am using Protopic now which seems to keep things under control and I have a top up session of radiation about every 18 months when I have a bad flare-up. I was told to stop all treatment whilst having radiation and maybe it is the combination of injections and radiation which isn't working for you? Best of luck
Hi Songbird
The radiation seems to help for sure. As I can only have 6 passes, they do the tops of my hands, my palms and the bottom of my feet and I think there has definitely been an improvement but it doesnt seem to last long? I heard it is supposed to last for months but I am not finding that, usually by the end of the week I am back to where I started.
My derm did it mainly to try and reduce the swelling on my hands and feet and without a doubt that has happened. Before I couldnt bend my fingers at all whereas now I can nearly form a fist. So it was to sort of top up on the Stelara if that makes sense as things were getting desperate. I also have to use diprosone ointment on my hands and feet as well and I think the radiation treatment seems to make the diprosone more effective?
With the steroids, Stelara and the radiation I am still not clear though and pustules are still coming up daily. My skin is less red and there are patches which actually feel like skin now and I can even see the lines on my palms whereas I couldnt before. I can open jars etc and hold things which is wonderful
I have done previously uvb, mtx, cyclo and enbrel. I cant do acitretin because I am still of childbearing age.
The radiation makes me as sick as on the day of it (and there is no good reason why as it isnt supposed to
) but after that it is fine. The Clinic wants to start zapping the rest of me once this round is finished but to be frank, I dread the thought. I see my own derm in 2 weeks so will see what he says then.
