Cyclosporine (neoral)

[Kazpig1]

Hi is anyone taking or has taken cyclosporine (neoral) at all and if so did it work. I have been taking it for the last 6 weeks and am finding side effects very difficult , do they lessen over time.

[Robert1959]

I took 2 x 200mg each day for 4 weeks and then 1 x 200mg for a further 4 weeks when I had my ITP and I was also having NPlate injections during this time which eventually put me into remission. Whether it was the Cyclosporine or the NPlate or the combination of both that did it I will never know. It has now been over 3 years since I was taking the Cyclosporine but I don't remember having any particular side effects to it.

[Kyriak51]

Hi kazpig1, what treatment did you receive prior to Cyclosporine? I don’t understand why you were given an immunosuppressant, do you have another disease process in addition to ITP? What’s your platelet count range? Be well kyriak51

[Kyriak51]

Update on recent post earlier tonight regarding cyclosporine: Sorry I didn’t check the medical literature before replying to your question about side effects. I have now read “Sustained Hemostatic Platelet Counts in Adults With Immune Thrombcytopenia (ITP) Following Cessation of Treatment With the TPO Receptor Agonist Romiplostim Report of 9 Cases” James B. Busses et al. Blood 2011 118:3281 and understand. I will be more carful in the future kyriak51

[Kazpig1 in reply to Kyriak51]

Hi that’s ok it’s all very complicated this itp isn’t it. My platelets are currently 1. And have not been higher than 3 for the last 2 years. I have had prednisalone, ivig, vincristine, rituximab (twice),revolade, romiplostim, MMF, platelet transfusion, dexamethasone both oral and high dose IV, azathioprine, cyclosporine and rapamune. My platelet count last week was 1 which I guess is better than the normal 0. I think they have now run out of options!!!

[Kyriak51]

Hi where do you live? I live in Chicago within 1-15 miles of four major university teaching hospitals and thus have access to the some of the best Hem/Onc doctors in the country which is not the case for most patients. Your doctors exhausted every options available to them, I’m so sorry that none of them worked for you. I’m embarrassed and ashamed of my “ woe is me” attitude and constant complaints such as “ I have to have weekly blood draws, my platelets are only 30-80K, I’m so fatigued “ and on and on. I’m in awe of your strength and ability to function with a platelet count of 1k. Do you have children are you able to work, how do you do it?

Hang in there, research is ongoing, there may still be new treatments to come kyriak51

[carnes555US in reply to Kyriak51]

Hi there! In Chicago too, and trying every option out there. Question for you, are you still on steroids or treatments? I’ve been on steroids for 4 months, albeit now down to 15mg, and on my 6th rituxan treatment, and I am exhausted all the time and having steroid effects back like when I was on 80mg. Thinking all the side effects are from the drugs and not the disease ?

[Kyriak51 in reply to carnes555US]

Who are you? I don’t remember communicating with you. Your post is directly under my post for kazpig1....perhaps I hit the wrong button. You seem upset about something in that post in which I shared I shared my location as “Chicago”. I’m new to this site and can’t navigate well, for example I can’t locate your original post. I don’t know your history except that we both live in Chicago, that you been on steroids for 4 months and on your 6th rituxan treatment.

Question: When and where were you diagnosed, what is your platelet count range? Rituxan is given as a weekly infusion for 4 weeks and has only a 50% response rate. Why on earth would repeat that treatment 6 times. In my case I was so sick with a count of 6K and not thinking clearly thus felt a 50% chance was better than nothing. While several on this site have excellent results, I was not one of them and moved on to Nplate in 2010 with good results. You’re in Chicago with access to the top Hem/Onc doctors in the country, you have options. Where are you receiving care? I can give you the names of several doctors who wouldn’t keeping giving the same drug that has NOT worked for you. Be well, and learn as much as you can about ITP, it’s symptoms and treatment options, the more you know, the better the care you will receive! Kyriak51

[Kazpig1 in reply to Kyriak51]

Hi I live in England, I to have access to some great specialist haematology doctors, and specialist centres close by. I don’t think you should be embarrassed at all, it’s a pain to feel tired all the time(I know I do to) and the constant hospital visits impact upon daily activities. I no longer work, my occupational health department decided it was to dangerous with a constant platelet count of 0. And a couple of times during treatment I was visiting hospital 5 days a week! (And couldn’t fit work in)I used all my leave so I didn’t have to go off sick, but as I say the decision was made for me. I just pace myself and continue as normal. I think I am now used to being permanently exhausted! There are new medication trials going on currently here in the U.K. so fingers crossed.