Suffering from ITP

Hello,

I sm 31 years old and I am suffering from ITP (low platelets count) since 2014.

It´s going to be nearly 2 years.

I took steroids ( prednisolone.mmf athaterapin ) and now I am taking revolade. But still my platelets are on 20-40.

I am not sure why? Could someone help me, I am suffering a lot and it does effect my lifestyle.

I am kind of loosing my hope in this. I would much appreciate if someone maybe could give me advice what else I can do?

Many thanks
My email: niro.sivag@outlook.com

I know that the goal for treating ITP is to have normal platelets, but a count of 20 to 40 is safe for daily life unless you are a very active person. What is the dose that you are on? Maybe it needs to be bumped up a little bit?

I know that ITP can be hard to live with, but it is manageable and life can go on normally. It's hard to accept when you have a medical disorder, but you are not alone. Many people struggle and all you can do is try to make the best of it. There is no answer to the question 'why' unfortunately. I think that is something that everyone would like to know.

Hang in there. There are other treatments to try if you are not happy with Revolade.

I am sorry that you are suffering, but you did not say what you are suffering from. Is it the worry about ITP, or is it ITP symptoms, or side effects of Revolade, or discontinuing the prednisone (or is it prednisolone?)? On this forum, I have witnessed more suffering from steroid withdrawal than anything else. How long ago did you quit steroids?

Hi. the dose i am taking now is 75mg of revolade daily. this is the highest i can take. i am taking it since 6 month. it has not many side effects but it my count is not going up.
Have you ever tried papaya leave juice?

hi rob. i first started with 90mg of steroiids along with mmf for 2 month, then i had prednisolone for few month. since then i gained 15kg of weight and my face looked like a moon. it didnt help me at all. the doctor gave me another medication. i had couple of infusions. none of these medication helped me. i am suffering from side effects, e.g. eye burning. my body is weak.my sex life is effected. i have to concentrate more than usual when i talk or write. or when i drive the car.i withdrew from steroids 1 year ago

Have you spoken to a doctor about your symptoms? They may not be ITP related. You could have a vitamin deficiency or some other medical problem.