High platelets

[Stevesmum42]

Hi friends.

I am wondering if anyone has been in a similar position to myself

I am 75. Diabetic. ET calr for several years , have been on aspirin and Hydroxycarbomide , my platelets have been rising for the last few years currently at 935. So obviously the HU has stopped working, 6 weeks ago I came off that and started anagralide , there were some side effects which I haven't had on HU, I got up to 4 anagralide then after my last blood test was very dissapointed to find the platelets were exactly the same count as before the anagralide. But also my heamaglobin was down to 95. My Heamo was dissapointed too. So I am iron deficient too. He has now put me back on 1 HU daily with 2 anagralide . So getting concerned , Heamo said he would have a look at other options after my next blood test in 3weeks.

Just wondered if anyone else has a similar story and how it was dealt with.

Have a great weekend I will be spending mine in the house blinds drawn and fans on!!!

Thanks for reading Sandy.

[socrates_8]

Hey Sandy... :–)

Well, I am not sure if what I have to contribute will be of much use, however, we do have a few similarities and so I thought if nothing else I would just hello in any event...

Sounds like you are all having a warmish summer over there, while down here in the antipodeans we are enjoying the colder contrasts of course...

Sandy, I also suffer from Blood Platelets (BPts) that are always bordering on the too high side of circa 1M, (952 on last). I am MF, and have been on Ruxolitinib (Jakafi) for c. 18 mths. During that whole time the lowest they have ever been was 648, and as a result my Haem' has me alternating between 20mg bd & 25mg bd on a cyclical bases. After a few weeks on the lower dose I revert back to the higher & my BPts drop significantly.

Previously, when on Interferon, they did drop down to 537, however, Interferon was hard for me to tolerate too... However, you might be able to ask for Pegylated (Pegasys) Interferon over there... Here in Oz, it is still not available on our PBS scheme, (making unattainable for many). The reports I have read are mostly positive... Lowering of symptom burden too, so they say...

Personally, I avoided taking Anagrelide because of the poor reports associated with Cardio' issues. I just don't want or need any further complications w/ my health...

Sandy, I am also CALR Type2, and I recently learned I also have ASXL1 mutation, which generally is associated w/ adverse outcomes... However, again, CALR is a better mutation to have if one must have one at all... And you might well be proof of that for me, as I am presently 59 & you 75. Already longevity is looking good...

Anyways, hopefully, things might be on the improve for you shortly Sandy...

Best

Steve

(Sydney)

[SuekJ]

Hi Sandy,

My platelets reduced dramatically when I started on Hydroxy but have steadily been climbing again. I take 2 a day which seems to keep them at about the 500 mark with borderline anaemia. My Haematologist is reluctant to prescribe Angagralide because I have cardio problems. I also take Clopidogrel and Asprin, maybe this would be a better combo for you? And mayb have your Spleen scanned (this too can produce platelets as well as the bone marrow)

Good luck with it all,

I hope you are keeping cool!

Sue