Blood counts

[Chel1]

But fed up got essential thromboycemia jak2 poss since jan this year my bloods playlets were going down now they’ve gone up last blood test so upped my hydra tablets to 1 -500 gr 1 day other day 2 but today said gone down a little but need to get down more to take 2 a day said I was 711 count was 780 just goes on

[Mazcd Partner MPNVoice]

Hi Chel1, it is very frustrating that this is happening and that you have had to increase your dose, this happens to a lot of people, and hopefully the counts will come down soon, you may find that your dose is changed until your haematologist is satisfied that your level is where he/she wants it. Best wishes, Maz

[Chel1 in reply to Mazcd]

Thank you for that advise do appreciate it

[Vtr1000]

Hi Chel1, I was diagnosed ET Jak2+ the end of last year. Since that time I’ve been taking hydroxycarbamide as well. My dose keeps creeping up as my platelets are going down very slowly with the occasional yo-yo and go up . It does get a bit frustrating that it’s taking a while to come down. But, when I read other posts I realise it can take a while for some of us to get our numbers down which sometimes helps reduce the frustration . I’m currently taking 2 a day, but on my last appointment they wanted to increase the dose which I declined as I was still trying to get around a side effect from the previous dosage change. Good luck with your journey.

[Chel1 in reply to Vtr1000]

Thanks for that it’s just the thought of taking more and more of the hydrea hope all goes well

[Hidden in reply to Chel1]

Hi l know how you feel. My platelets were at 1200. l started on 7 pills then 10 then 14 finally they dropped to 740 now l am on 17 a week. A little anxious that it could be 20 next. I guess its see how it goes. I have not had any side effects as yet and actually feel better less fatigue. I had lightheadedness which has stopped completely. But it’s important If you feel unhappy seek a second medical opinion. I am considering it just because it’s for the long term and l would like reassurance.

[Chel1 in reply to Hidden]

Thank you for that I thought I'd give it till the next appointment in Nov see how they are then then may go for second opinion although he told me they start on low dose first to see how it goes then adjust after that till they get it right so will see but still a worry

[hunter5582]

Sorry to hear you had to up the HU dose. I hope you are able to tolerate the med at that level. Do know that there are other treatment options that my be more effective. HU does not work for everyone. We are each different in how our MPN presents and how we respond to meds. Some do much better on PEGylated Interferon or Ruxolitinib (or other meds).

For now hang in there and remember that it is the actual symptoms that matter more than your platelet levels per se. As long as you remain symptom free (e.g. thrombosis or hemorrhage), then there is no real difference whether your platelets are in the 500s or 700s. My thombocytosis routinely cycles in that range and it does not cause any problems for me. Note: that is for me - how my PV presents. What matters is how your MPN presents.

It is really important to consult with a MPN specialist rather than a regular hematologist, particularly when there are issues occurring. Just in case you are not already seeing one, here is a list. mpnforum.com/list-hem./ .

All the best.

[Chel1 in reply to hunter5582]

Thank you once again for your good advice will see how it goes if I’m not happy will see about getting a referral to mpn specialist

[Caryopteris]

Don’t despair! I have had the same condition for over 10 years. My blood platelet count is never constant and every three monthly blood test it is either up quite a bit or down quite a bit. But if I do a running average there is actually very little change. It is not nice having an MPN but if you must have one ET is the least worse.

Best wishes, Caryopteris

[Chel1 in reply to Caryopteris]

Thank you for your advice