Hi all
Having tried and failed with: Azathioprine, Rituximab, IvIG, N-Plate, Eltrombopag, Predisolone, MMF and Dexamethasone. I am tapering my prednisone so that I am off it shortly and will then begin Cyclosporin. Anyone any experience with this? Has it worked? Side effects?
Wow, you have tried many different treatments. I have not tried cyclosporin but I wish you every success with it. Nicky
I have tried Cyclosprorin and to be really honest, it is a terrible "pill to take". You will be put off by the size of the tablet and even more so when you read the booklet that accompanies them. You may have been told that this tablet is for people who have had organ transplants. It didn't work for me and I doubt it will work for you if none of the other meds have worked. Side effects - felt dreadful, hair follicles damaged, aching legs and more that I can't remember. Prior to this tablet I took prednisolone so some of the side effects could have been due to that.
I am sorry this is so negative but I am being absolutely honest. But it is your decision and your doctors
Best of luck whatever you decide.
Trev - I have had ITP for quite some years now and I have had single figure counts. I am lucky in that I don't bleed or bruise. Along with NickyD above, there used to be a very good contributor on here - Sailor and he had much to say about medication without contradicting the docs. All the medication I had made me feel quite ill (I am also diabetic on insulin) and to me it is all about quality of life (which matters to a 66 year old). You may be much younger.
I listened to a talk that Dr. Drew Proven gave some years ago - quite a long talk. Basically what came out of that for me was - look at the patient - if s(he) doesn't have symptoms why treat them with medication not for that purpose, when there is currently no cure.
Basically what works for me may not work for you and I am not here to change your mind. In my case my platelets did go up initially with prednisolone but dropped, they also went up with other meds but then dropped. I have been medication free for almost 3 years now and have my platelets checked on a regular basis and they do fluctuate, but they fluctuated with medication.
Obviously if you bleed, bruise etc. my scenario is not for you.
Have you seen an ITP Specialist? If not why not ask you GP to refer you to Dr. Drew Proven. I am sure NickyD will confirm he is very good.
Hi Mags
I am seeing Drew Provan and he is the one who is suggesting Cyclosporin. I think the problem is as he says - when you have symptomatic ITP and have failed on the drugs that I have, the only ones left are ones that are unpleasant. He did tell me about a trial that is taking place soon that is of a new type of drug that blocks the receptors. This seems very interesting.
I can't argue with Drew Proven - as I said he is the best. Kered has given you some good info on Dr. Proven. When I went to his clinic approx 3 years ago (I wasn't able to see Dr. Proven then) but his assistant didn't suggest cyclosprorin at that time, but a tablet called mycophenalate. But as I say I can't and won't argue with Drew's recommendation - he is, after all, the doctor.
Good luck and please keep us all posted on how you go on.
I have tried mycophenalate(it is known as MMF). It was ok from a side effect point of view but didn't improve the count at all. I will keep you updated. As you say Drew is the man who knows. A big problem is that my haematologist at my local hospital doesn't agree and is keen to take my spleen out(despite an indium scan that shows there is unlikely to be any benefit to this).
Trev. I agree with mags about treating or not treating. The drugs used are very potent and all produce unwanted effects to varing degees depending on the individual. There are still other drugs to try and others in an advanced state of testing for ITP. If you are lucky enough to get a response then it is getting the balance right between the amount of drug, the side effects and your quality of life. If you are able to have a normal life untreated then why go for nasty drugs, but having an emergency plan in place. In an emergency platelets can be useful but are very quickly eliminated, but under such conditions a blood coagulant could also be of benefit.
In your position I would get very professional advice from a leading expert in the field like Dr Drew Provan for your peace of mind.
Have you had a bone marrow biopsy to look at the megakaryocytes which produce platelets?
Very best of luck in your difficult case, but stay optimistic because a treatment that did not work before may well work in combination with another drug. As far as I am aware Drew Proven rarely,if ever, fails to come up with a solution.
Derek
I had my spleen taken out. The following week my count was in the 500's and i was ecstatic thinking i was now cured. But within a month it had dropped to single figures and i was admitted to A&E with bleeding. I cant tell you how devastated I was. I have now learned not to get my hopes up. I take penicillin twice a day and i am prone to get ailments. If you can keep your spleen then keep it. I was not aware of the indium test until after my spleen had been removed and was not happy to find that i could have had the test. I went to see Drew Proven, after asking for a referral to see him and he put me on MMF. I know i am lucky to have reacted well to it. Immunosuppressant drugs will affect your immune system - they have to, by their nature, so there will be lots of side effects. I tend to stay out of the sun if I can because of the increased chance of getting skin cancer. I have a friend who takes Cyclosporin and it makes her joints ache. Let us know how you get on. Nicky
I have taken cyclosporin (neoral) for the best part of 2 years following a liver transplant. My liver function is fine but I am now suffering from itp (count<5). I do not think this is due to cyclosporin. I have had no side effects using this anti-rejection medication.
As an addition to my previous reply, obviously the use of cyclosporin did not help keeping itp at bay.
Hi, I'm no expert on ITP even though I've got it myself! Like you it has taken a while to find something that works although luckily for me Eltrombopag is the answer to my prayers. I have just remembered my Haemo telling me that if it didn't work then they would try Romiplostin injections. As you didn't mention it in your original post I thought I should flag it up. Have also heard Dr. Provan is the expert so I'm sure you are in good hands. I wish you luck with your ITP journey as for some it can be a very long road.
Ah, ok. I never realised that!! Wish you luck and lots of platelets. 
Platelets & me
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ITP Fatigue, back and joint pain
