Fellow ET Sufferers - increases platelet level whilst on Hydroxy

[Ravenred]

Hello.... Just wondering if any fellow ET sufferers have experienced the same or similar.

My background: 47, female, UK, JAK2+, diagnosis 2018, meds hydroxy 16 tablets per week.

Today I discovered my platelets have risen back up to 798 from 590 between my 3 monthly appointments. At diagnosis in 2018 my levels were 900+ at the highest and have slowly dropped through to the 600 during the past two years. My consultant has requested I return again in another 3 months for another reading to see where my levels are before he suggests increasing my meds, so to build a better pattern on my platelets & to rule out a one off high reading. Over the Christmas period I was without any meds for about 5 days (not for the lack of trying to get some!) But would that be enough time for my platelets to rise so dramatically back up.

Has anyone experienced the same/similar. What was your outcome?

Many thanks to advance.

[Tico]

Hi Ravenred, I'm Et jak2 and my platelets regularly go up and down between visits but thats normal for me! I noticed you said you were off your meds for 5 days over christmas, that could have made a impact as when my white cell count as gone too low and my haemo told me to stop the Hydrea for 7 days for them to come back up,my platelets have absolutely gone through the roof! This as happened everytime i've had to have a 7 day break because of other blood cell counts dropping without fail. So I think the 5 day break for you could have been significant and hopefully when you go back in 3 months time your platelets will have settled. I wish you luck. Atb,tina.🤗

[Ravenred in reply to Tico]

Hi Tico,

Many thanks for your story. I’m not overly worried just intrigued to know why this may of happened. Like you say it will be interesting what happens in three months time.

Take care. X

[Wyebird]

Hi Ravenred, don’t know if this helps but it’s taken 4 years to get my platelets to stabilise. Platelets up meds up platelets up meds up etc. Now after tweaking my anagrelide and hu. I’ve had about 3 months of stability 😄350- 420 Still early days

[Ravenred in reply to Wyebird]

Thank you for responding to my post. I guess this is a lengthy process of trial & error. Glad to hear your platelets have finally stabilised in the normal range, that’s fantastic. X

[Tico in reply to Wyebird]

Hope it continues. Atb,tina.🤗

[Ebot]

Hi there.

Platelet counts can bounce around. It can take quite a while to find a balance between dosage and counts. The fact that you were off meds over Xmas may have had an impact (not sure if you were accidentally without or you ran out of meds). The important thing is the trend. I went from 1700 to 900 very quickly. Then to 600 where it plateaued. It then dropped again to just outside normal range. I then had a period where it looked liked it might be climbing again but on my last two visits my platelet count was well within normal range. Over the past couple of years my Hydroxy dosage has been adjusted a number of times to reflect the plateauing and the blips.