Cyclosporine????

Ok I've tried everything now their talking about cyclosporine??? If this was an option before why am I only hearing about it after prednisone rituxan promacta nplate ivig splenectomy colchicine the low dose chemo everything lol has anyone had any success with it? Thanks any input would be awesome

They probably didn't recommend it before, as it has some pretty serious side effects:

Cyclosporine is a drug that reduces the body's ability to fight illness/disease (an immunosuppressant), leaving patients vulnerable to infection or other problems (including cancers such as lymphoma). Using other drugs that treat organ transplant rejection along with this drug may increase these tendencies.

Cyclosporine can also cause high blood pressure and kidney problems. The risk of both problems increases with higher doses and longer treatment with this drug. Psoriasis patients who have had certain previous treatments (e.g., PUVA, UVB, coal tar, radiation therapy, methotrexate) are at increased risk to develop skin cancer. Therefore, cyclosporine must be given only under close medical supervision.

Didn't you recently have a stroke? It seems to me that the potential of high blood pressure from this med would contraindicate it for you. In my personal opinion, I feel that the immunosuppressants are at the top of the list for most damaging drugs. Being on them longterm or at high doses makes it almost impossible for the body to heal itself. What are your other options? Well, you've tried all of the conventional treatments. Perhaps it's time to take a look at some of the natural and alternative treatments. Any of the energetic treatments would be worth a try: Acupuncture, Reiki, Homeopathy, Pranic Healing, Qi Gong, Healing Touch, Touch of Matrix, EFT, just to name a few.
Even if they don't work for you, at least they'll do no harm, and you're almost guaranteed to reap some positive benefits in other areas of how you feel.

I have taken cyclosporine for psoriasis, before I developed ITP. It was very effective there, but it does have a lot of side effects. It have no idea whether it will work for your ITP.

The side effects were, at higher doses (300 mg/day), tremors, general shakiness, and various feelings of icy hot/cold in the extremities. My doctor had me on 300 mg for a few weeks, then 200 mg for a few weeks, then 100 mg for about 6 months. At the lower doses, the side effects were mild.

It is also somewhat toxic to your kidneys if taken for extended periods, so many doctors try to use it for a short run (few months) to limit this. Of course, it is used permanently for transplant patients, who will reject their organs if they don't have it, and they are on it at much higher doses, so the toxicity at non-transplant doses isn't severe.

I had no problems with lowered immunity during the time I was taking it. I didn't catch cold, get infections, or anything else. I think at the doses I was being given, I had enough immune system still working to be OK.

Hope this helps...

I think it's probably a last ditch effort because it's success rate for ITP isn't very high. Good luck, Kelli.

I tried a combination of imuran, mycophenolate mofetil, and cyclosporine, all immunosuppressants. Although they had no effect on rising my platelet count, I suffered no side effects either (including no infections).

Attached is a paper describing the use of these drugs for ITP - albeit the sample size of the study is small.

Thank you and yes I did have a stroke be my platelets got to 600,000 and apparently my platelets are way to sticky for that they said I'm not likely to have another one as long as I monitor my counts.....well those side effects sound fun man my body needs a break I'm really just thinking about refusing treatment I'm 26 I think this is gonna cause more damage then good I just want to be able to work again do things again have kids but all that seems so far fetched now thank you for all the responses

I was put on cyclosporine about 10 years ago, it worked OK for a while, then my counts began to fall again. Personally, the drug frightened me a little, looking at all the risks, vs. benefits. Is cyclosporine your only other option? Have you tried Promacta? Also, check the PDSA for new treatments just emerging.

I took Cyclosporine for a couple of years for ITP treatment. Started using it after CellCept failed (a year on CellCept). Cyclo worked okay for ITP. Kept me above 20k anyway. But....The only really good thing about it was cost, it was dirt cheap in generic form.

While we are all different, I got ill a lot while using Cyclo. I'd catch most any bug anyone around me had. Of course, I was playing guitar and singing a lot in bars back then also (in addition to my engineering gig), which didn't help anything.

Eventually Cyclosporine just simply stopped working for me, my count tanked to 4k and stayed there. After a boost from Dex to get me close to 10k, I started taking Promacta. That was over two years ago.

But hey, I'm 58, so the 'side effects vs benefits' thing looks different to me than if I were still 26.

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all the drugs scare the hell outta me anymore lol but my counts were oddly 47 the other day maybe all the solu medrol from the allergic reaction iu had alllllot not complaining if i could stay 20-50 id be happy i dont need any higher then that my bodys so used to functioning at low counts...and yes i did try promacta and had no response but my liver levels went u[p tremensly and i like to drink so that drug was no fun not bein able too lol im just gonna take it day by day and make a dcision when it comes time im hopin they stay up for a lil bit another remission would be awesome wishful thinking lol