My Papaya Leaf Extract Just Arrived!

I would rather not have a high count - not even the normal high count of 450k.  My lowest count was 11k and dropping so I don't know how low it went or would have gone - I found that scary, definitely.  Not sure I'd like the constant 5k the ones in our ITP group had, but neither had symptoms so I don't know.  

No, you do not want to constantly be on prednisone - I was on it too long, mainly my fault because we lived in Hong Kong and my Brit trained hematologist would panic every time my count went  down from the last count - I did not want a splenectomy there.  So I stayed on a low dose after my count stayed ok on the higher dose, was on it close to 4 years.  I believe I am paying for it now - both knees replaced due to arthritis and now my right shoulder has it and is it every painful!!  Pred as an emergency would be ok but I still said no way am I taking it when my count tanked from a tetanus booster before our son's wedding - my hematologist got approval from my insurance to give me WinRho and my count went up to a decent count.  

I get a CBC every now and then - usually before seeing my fantastic hematologist.  However if I feel my count is off then I just call and ask for an order for a CBC be sent to the lab.  I'm not trying to get to the normal range, I just would like to be over 60k.

You do what you have to do and be true to yourself.    When do you see your hematologist again?

I don't bleed terribly, but I do have symptoms when its down to 5.

Sorry to hear about your bad prednisone side effects. 

I don't see much reason to see my hematologist. Its just a numbers game. Oh, I think he wants me on tpo agonist, but until I'm ready for that, there isn't much reason to talk, except by email.

Thank you - knees ok now, but peripheral neuropathy for over 20 years is now affecting my legs.  Oh well, I'm waking up in the morning so I'm happy

I like to see my hematologist at least 1x a year, that keeps me in touch with him and then if I have a problem I can get in to see him.  Also I email him questions - like is it ok to take baby aspirin after knee surgery to prevent a blood clot, the answer was yes but needed counts done to make sure ok, actually my count increased.

You do what you feel is right for you that is the only thing we can do!