Idiopathic thrombocytic purpura
February 23, 2016 4:17 PM Subscribe
Anyone suffering from ITP? I was told I might have a mild case-ITP with platelets in the 120-130s and elevated MPV.
What are your numbers?
I am going to get a blood draw tommorow and I freak out... I know will not be perfect.
I was told it will wax and wane normally.
I am scared I will need one day a bone marrow biopsy. What is your experience?
I had that when I was a kid, and it was entirely unnoticeable - I just stayed home for a few weeks until it went away, I felt fine the whole time. My numbers were super low, but I don't remember exactly what - luckily my mum is a nurse so she noticed the weird red dots (tiny haemhorrages)
posted by Sebmojo at 5:28 PM on February 23, 2016
posted by Sebmojo at 5:28 PM on February 23, 2016
I have had ITP for about 16 years, since it was diagnosed during my first pregnancy. 120k platelets would be huge for me! I was recently up to 80k during a run of steroids, but regularly run 50k-70k. My hematologist says, "People have way more platelets than they need."
Here is how it has worked for me: Nobody so much as raised an eyebrow until my platelets drop below 50k. You're not at any risk of spontaneous bleeding until it's under, like, 10k. I've only gotten that low once, during a pregnancy—for some reason, platelets go down during pregnancy. I've never been treated with anything more aggressive than steroids, which are very effective at bringing up platelet numbers.
I can't promise you'll never need a bone marrow biopsy, but I've never had one and it's never been suggested I would need one.
posted by not that girl at 5:41 PM on February 23, 2016
Here is how it has worked for me: Nobody so much as raised an eyebrow until my platelets drop below 50k. You're not at any risk of spontaneous bleeding until it's under, like, 10k. I've only gotten that low once, during a pregnancy—for some reason, platelets go down during pregnancy. I've never been treated with anything more aggressive than steroids, which are very effective at bringing up platelet numbers.
I can't promise you'll never need a bone marrow biopsy, but I've never had one and it's never been suggested I would need one.
posted by not that girl at 5:41 PM on February 23, 2016
My husband has ITP and like not-that-girl, we were told that as long as you above 50k, you are fine, even if you need surgery. When he was around 20K, they wanted to do something about it. (In his case, an IV treatment of specialized antibodies since his was cause by an autoimmune issue with the spleen. It involved sitting in a chair to get an IV treatment for 20 minutes and then feeling like he had a mild flu the rest of the day). Once it got to the mid-20s, it was a just a matter a watchful waiting. He gets a blood test every month. If he needs surgery they might want to a platelet transfusion to make sure his clotting was OK but there is no concern about every day life. Nothing anywhere as nasty as bone marrow transfusion even at much much lower numbers. YMMV depending on the exact cause of the problem but in any case, but I don't think you have any cause for worry at 120k.
posted by metahawk at 9:55 PM on February 23, 2016
posted by metahawk at 9:55 PM on February 23, 2016
This thread is closed to new comments.
It would be unusual to need a bone marrow biopsy. That is not part of the usual management, only for certain rarer cases.
posted by treehorn+bunny at 4:41 PM on February 23, 2016 [2 favorites]