Hello Kath
I'm sorry you are having so much trouble with your skin. I haven't come across anybody on cyclosporin for skin lupus and maybe only a couple of people on it for SLE in many years of forumming.
As far as I can make out the reasons why it is so seldom used are as Raglet says.
I had to stop taking Thalidomide although it helped my skin a lot because of clincially unacceptable side effects but I was sort of pleased because the other side effects were personally very unwelcome. It is so disappointing when you have to stop a good medicine or it stops working.
I found that adding Mepacrine to Plaquenil was wonderfully helpful. It helps with general disease modification too and doesn't affect the eyes. The Plaquenil was changed to its stronger version Aralen/chloroquine
In my case the addition of low dose Imuran gave the final boost.
It seems that Cellcept is being found useful for lupus skin. They asked me at St Thomas London where I am a patient if I wanted to try it considering that my skin isn't as good these days as it was a few years back.Cellcept is also used for SLE of course.
If your doctors are rheumatologists they might not be well up in treatment for lupus skin. If you feel that is the case ask to see a dermatologist. There are a few in the UK who specialise in skin problems of connective tissue diseases like lupus. There's also St Thomas and the associated St John's Dermatology for tertiary referral.
Certainly your doctors should be willing to explain the suggestion discussing the possible benefits and their experience of it, along with the risks and precautions that need to be taken, so you can make a fully informed decision.
If you haven't tried the Plaquenil or Aralen combination with Mepacrine, I would push for that. I take 100mgs Mepacrine a day and 500 Aralen, used to be 400mgs Plaquenil. This is a pretty hefty dose of Mepacrine and 3 x a week is more usual in the UK and usually all that's needed.
Sorry if these suggestions are no use to you but I do hope you can get it cleared up. It is so depressing dealing with skin even if it is the only thing to cope with.
There is a very new drug that's proving successful so far in limited trials but I dont know if it's been used in lupus other than discoid.
Please let us know how you get on, best wishes and lots of luck
Clare