Ciclosporin

Hi, just seen cons and latest drug he wants me to start is ciclosporin. Just wondering about people's experiences on it. Xx

[tremarel]

Arh not a bad drug to take, been taking it for seventeen years after having a kidney transplant & no problems. The only problem is if you're on high doses it can make you a bit hairier. I'm on 50mg twice a day & no side effects. When I was on 100 mg twice a day my hair on my head was thicker & my arms were a bit hairier. So nothing to worry about x

[Hidden]

Thanks for that. The cons did mention that but as I'm only on a low dose, he said it probably wouldn't be a problem. X

[twist1]

Hi I had to take seven of these a day at one point and its the hardest drug I've had to take. Especially if you have stomach issues. They are a large pill and stink!!!. It is hard to say don't take it as being ill you want anything to relieve the symptoms. Just keep in mind, if you do not like it or what it is doing to you, there are alternatives so don't put up with it.

I got some skin blotches taking mine and trying to drop steroids so they moved me to mycophenolate mofetil. A much easier pill to take and it turned out to be much more effective but can't be tolerated by all. So there are pros and cons with any drug, find what works for you

Good luck

[Hidden]

Thanks for that, sorry you had problems, but like you say there are alternatives, usually. In my case the only other option is cyclophosphamide which will be used as a last resort due to my physical condition. It gets so disheartening when everything they give you has to be stopped and you are told by several consultants that u have reached last chance saloon. The trouble is its not just lupus they are managing, but CIDP which causes nerve paralysis, so along with lots of other issues, makes it very complicated.

Anyway, rant over, thanks again for the reply,

Xxx