Rapamycin is an interesting drug. First, in trials as a cure for (I think) athletes' foot, it was never marketed for that because it was a powerful immune suppressor. It became the "go to" drug for organ transplants, but it is being used "off label" in lower doses as a longevity agent (due, I think, to inhibiting mTOR, a well known pathway to increase longevity and decrease cancer risk) Curiously, in low doses , Rapamycin _increases immune function in lower doses in older humans. Anyway, a drug worth following. _
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SurferDude
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It sounds a bit like the drug Mycophenolate Mofetil (MMF) in that it is an immune suppressant and is used widely in cases of organ transplant where the requirement is for the body not to reject the new organ.
I have done well with MMF since 2016 with pretty much normal platelet counts )apart from the odd blip) on a relatively low dosage of MMF hence sparing the nasty side effects of steroids.
I have low counts and just weaned off my first treatment of Prednisone because it didn’t increase my count, so I’m looking for alternatives. Did you have your spleen removed before trying MMF? What dose are you on? Do you take it daily?
Sorry for all the questions but if I don’t take suggestions to my hemo nothing happens.
No problem, always happy to pass on my experiences. But it is always worth making the point that they are my experiences so they won't necessarily happen to other ITP sufferers. Even so, there are some useful pointers.
Easiest way to explain some of my MMF and past ITP treatments is to direct you to my ITP blog at the following link....
Thanks for the link Anthony! Great work and effort to create something so detailed. I’ve only had a brief scan but will read the rest after work tonight.
Just FYI I had a very similar journey and started on prednisolone too. The doctor suggested having my spleen removed but suggested checking my bone marrow first to write of any issues there. It might be worth seeing if you can have that tested?
(I’ve had prednisolone, dexamethasone, rituximab, none worked then I was put on revolade which took a month to show results and got up to 112 but over the last.3 months it has decreased back to 34)
Had bone marrow test back in 2010 and nothing amiss but boy oh boy was it painful. Excrutiating, albeit only a short burst of pain but absolute agony. eyes are still watering lol
Sorry to hear that you've had so many treatments that have not worked out. It really is a test of endurance at times & such an enigmatic illness.
Hope that you can get some better news with Revolade, even if they can get your count to a stable level & just maintain it there it would give you some comfort
I'm very interested in this product. Could you tell me of any side effects you feel while taking it? I have an uncle with a liver transplant that has been taking it for years without issues. I'm actually on prednisone because all other options had failed and was thinking of trying Revolade, but the cost is too high and my insurance won't cover it.
Thank you so much Anthony. Just bought your book!!!
I've had ITP for 19 years and tried almost everything but splenectomy. I will talk to my doctor this afternoon about Mycophelanate Mofetil. I'm happy because it's an option I had never heard about. I'm actually on 60 mg of prednisone and 200 mg of Danazol. My platelets today where 233, but I'm feeling terrible with all the side effects.
Yes I now what you mean about side effects. Prednisolone is the devil's drug. I have had an awful time with Prednisolone over the years. Had it 6 times on and off during my 14 ITP years and it is just wretched.
I also reacted very badly to Azathioprine and after only 3 days had to come off it back in my early ITP years. It made me very dizzy, nauseous, feverish and I just couldn't tolerate it at all.
Rituximab worked for me in 2010 and 2013 (no noticeable side effects) giving me about 2 years 8 months remission both times but I relapsed in 2016 hence then switched to Mycophenolate Mofetil.
My side effects from MMF are general nausea in the morning but not much. You learn to handle it . Obviously like with all the immune suppressing drugs it does make us more vulnerable to colds, bugs, flus, viruses, infections etc so we need to be more cautious than most.
Anyway, very best of luck.
Hope all this helps.
Keep in touch and let us know how you get on.
We are all still learning ! Every ITP day is a school day !
Hi yes take this for my ITP as every other drug didn’t work and my plates were 0 for 3and a half years. Since starting this my platelets have been 270 for the last 6months.
It certainly is. It has potential use in many immune disorders that cause cell destructions. It was a possible suggestion for my condition (mine is not not limited to just ITP) but so far maintenance Rituximab has been working.
Certainly a drug to follow, together with the newer inhibitors such as Everolimus which are a newer generation Sirolinus / rapamycin
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