Posted Sun 25 Jan 2015 21.45 by spadeboy9816 I have had several breakouts which started during my 20s. They imrpoved over time but I have been through several treatments, some of which
Hi Folks. This is my first post so please be gentle. I am 44 years old. I have Asperger's Syndrome and a form of associated schizophrenia and at times I may appear irrational. I have been under good control with this for a long time and I do not expect problems but if anybody feels that I may have over-stepped in any way, please tell me because causing offence is never my intention.
In terms of psoriasis, I did at one time have it quite badly. I spent years taking retinoids but after a time I felt I just could not handle another treatment. Every time I so much as tried to dry myself with a towel it hurt - almost like a bee sting.
I asked about Cyclosporin and to be fair I was given it nearly straight away and spent many years on this. As to them being happy years, I am not certain. I did have headaches a lot and just generally felt weird. At the start I had mouth ulcer after mouth ulcer and these really, really did hurt and cause misery.
Anyway, I spent around eight years on Cyclosporin and eventually one of my blood tests showed high creatinine levels. This really did frighten me. The main reason for my fear was that when I first asked about the drug, it was one of the Clinical Assistants who saw me. I really got on well with him as a person and we would always talk very generally about all sorts, not just my condition. Anyway, this doctor was not keen on me going on the drug - just because he cared about me really. He told me that when the creatinine levels start to increase, this is where I need to worry.
Also, a very close friend of mine, a doctor in endocrinology, told me that if I stopped the drug straight away, my kidneys would improve and the levels would go down. Well, I am very happy to say that my creatinine is now almost normal. However, coming off the drug also meant that the condition has returned.
Initially the specialist let me try topical treatments, but he said there was not much hope given that it has always taken much stronger treatment to control the condition. And he was correct.
He said that I had to start cyclosporin again but I asked about Azathioprine. I have never taken this, but I know it is an alternative.
However, now I am in this horrible position where I am sat looking at the box of medication and the condition is getting worse, but for some reason - I have no idea what - I am really scared to take it. This is not because people have told me negative stuff, I am just frightned. Maybe it is that at the moment everything seems to frighten me and that is even with my antipsychotic meds cranked up to the max. It might be that. But that said, everytime I go online and search for patient experiences on this drug, every one of them is negative. Every one tells me that people feel sick, malaise, stiff joints (and I have severe asteoarthritis), unable to sleep at night but feel desperately tired during the daytime, continual mouth ulcers, bruises - the list goes on.
I need to get this moving, I really do. The psoriasis is getting worse. I am very sorry to have taken up so much time already, but can somebody - everybody - please tell me if you hve experience with this drug and if so, what was it like? If it is negative, please tell me because I will then at least know what to do - I will simply go back to the specialist and tell him that taking the drug is not an option. If I have to go back on Cyclosporin I will but I would rather not and to be fair, I think there are better treatments out there now.
Please help me.
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