Anyone taking cyclosporine? What side effects have you experienced?

[mags4743]

I have been on prednisolone for over 3 months and my platelets are worse now than when I started. As at today they are 10 and my doc. wants me to go on cyclosporine. I am very reluctant.

[sailor]

Hi Mags4743. I went on cyclospsorine many years ago. They did not do anything for me just like prednisolone did nothing. I ended up on Ivg until I was eventually put on watch and rescue but I am fortunate that I do not bleed. My count has been around the 10 +/- for about 10 years and I have managed a normal life style only modified to exclude extreme activities!! I still have my spleen - I refused that being removed.

My GP was not happy with me taking cyclosporine. He said it was a terrible mixture of chemicals and I therefore share your concerns. Fortunatly, I was not on it for long and I was taken off. I am now on 12 monthly checkups at the hospital. Ultimatley, it is your decision but I wish you well.

Sailor.

[mags4743]

Thank you so much for your response Sailor. I, like you, don't bleed apart from a very minor nose bleed which stopped in seconds. I do have a few bruises on my stomach where I inject insulin (type 1 diabetic). A rather unfortunate disorder for me eh? Prednisolone did nothing for me either. My GP was not happy to give me Cyclosporin until he spoke to my haematologist and then changed his mind! I have since had an email from an ITP specialist in London who says he never uses Cyclosprin but prefers mycophenate. I think I will go with what he says.

I am so glad I joined the ITP association to get responses from people like you.

Thanks again.

Mags

[mags4743]

meant Micophenolate