Worried-last count at 25

Went for my 2 month follow up on Tuesday and my count was 25--the lowest it's ever been. The past 3 months I had been doing 4 days of prednisone (60mg) every 4 weeks. Apparently not effective. I did a 12 day course of pred in July and that was effective--but hematologistsnt want me to be on it long term.

Doctor is now recommending Nplate or Promacta. He's checking to see which one is going to be cheaper with my insurance. He said he doesn't prefer one over the other. Still waiting to hear back from him.

He says 25 is not a critical level--I worry because that's the lowest it's been. I worry that it's going to drop even lower between now and the time I start either the Nplate or Promacta--and I'm going to bleed internally in the meantime. Ugh. I have been more tired the last 3 days but I think some of that is because this past week was my first week back to work after a 2 week vacation. Lol.

If it makes you feel better, my counts have been in single digits for 10 weeks now. At some point I transitioned from worrying to mindfulness. I know there's a chance on internal bleeding, but I choose to not let that fact overwhelm me with with worry, which in turn will increase stress. At the same time, certainly I have to listen to my body and be aware if there are symptoms on internal bleeding.

In short, don't worry until your body tells you it's time to worry. (I know, easier said than done!)

I'm also about to start a new treatment...just got approved for NPlate and will find out Monday when I start those shots. I hope whichever you get gives you the results you need!

Matthew is right, that's about all you can do. People rarely die from ITP, so try not to worry. 25 is still good and you need to just watch the symptoms. It takes time to get over that fear. There are many of us here who have been below 10 and are here to talk about it!

My count is now 15, and has been around 20-25 during the past four months. I do not follow any treatment since one year. The hematologist agrees to wait and see the evolution of the counts. I guess that the treatment will start if the count is lower than 10 or in the case of symptoms. I have no signs of bleeding.
MatthewR: I guess that without a trauma, before getting a major internal bleeding one should get some signs of bleeding in the skin (as purpura), do you agree?
Carl

Carl: That's a great question and one that I don't know the answer to. Logic would say that you're correct in saying that there would be outward symptoms first, though there are some drugs that can cause internal bleeding - say, in the stomach - and that might occur at higher counts and without an abundance of outward signs.

Matthew,
I follow your logic, you are perfectly right about drug-induced internal bleeding. Although this is happening mostly in the stomach or the intestines because of direct contact with a tissue-damaging agent. In a general clotting failure I would expect that the whole would body bleed and probably mostly from the peripheries as the smallest capillaries.... This is probably why the hematologists are not very much worried about low counts if there are no outward signs.