Ciclosporin - Doing OK but.................

[Brighteyes]

After a frankly horrific round of steroid creams, light treatment and numerous infections (hard not to get infected when your skin is constantly tearing) plus major bouts of Black Dog (my pet name for depression) I finally got onto Ciclosporin. Took over a year and I gradually became housebound/bedridden.

Anyhow, the Ciclosporin kicked in pretty fast. Took a bit longer to get my mobility back to normal and slightly longer to get the Black Dog back in it's cage.

I was prescribed 320mg per day but I have managed slowly drop it to 200mg and still stay comfortable. I did experience some nausea when I first began the treatment but that seems to have died down. The tips of my toes and fingers do tend to sting somewhat when I bathe or wash up but it's manageable. The bl***y excessive hair growth is a pain. I must be keeping Veet in business.

What annoys me though is, on two occasions, my prescription has run out before my next appointment. I can't get them on repeat prescription, it has to be at the hospital after a blood test and a consultation. Fair play, they have to keep a check on my kidneys and all that but it annoys me that, every so often, I have to go back to square one because I've only got say 3 months worth between 4 monthly appointments.

I'm facing yet another relapse. My meds run out on Monday but my appointment is not until June 11th. Within three days of coming out of my system I'm going to be in Agony Central again. Absolutely no cancellations available (believe me, I've begged).

Sorry for the long post but I just wondered if anyone else had had a similar experience with their Dermatology Clinic (or is mine just very bad a math)?

[Fred]

Nice post, please keep it updated.

I like the Black Dog description. I used to have a wall where I was one side and the ***** was on the other, he never did get that wall down and never will now.

Hair growth can I have some for my head please.

Re your appointments: I don't know about the UK but I have learnt when my dermatologist says make an appointment for 4 months time, I make one for 3 months time and I tell the receptionist my dermatologist told me it was important to have it in that time zone. They can't be bothered to try and check with the dermatologist

Ooops I didn't say that. Dr H (I know she sometimes reads this forum)

[mickyfinn007]

My Dermatology department at the hospital are actually very good, when I was on MTX I would always have a follow up appointment a week or two before my MTX supply ran out.
I have also been that regular over the last 3 years at my hospital that they now call me by my first name and ask me what treatment I want next, even if they try to set me up with something else.
Good Luck with the appointment system, but like Fred says, make it work for you, after all it is only the NHS. Play the NHS game.

[mickyfinn007]

I am surprised they never gave you the option of Acitretin, as you are likely to have less side effectsand there is a treatment option of anything between 25mg-75mg daily, depending on how you react to it.
Hope things work out for you,
Good luck
Micky