increased platelets

[Bear111]

I was diagnosed with ET in November 2019 after being diagnosed with a blood clot on my brain and JAK 2 + result, I take 500mg of Hydroxycarbamide daily, however my platelets are steadily rising and are now at 450, my haematologist has said that we may shortly have to increase the dosage, this has left me feeling very blue and worried, unfortunately my haematologist doesn’t explain things, he says very little, can anyone tell me if this means my ET is progressing or if it is normal for them to increase after nearly 6 years of taking Hydroxycarbamide, any reassurance would be lovely, many thanks

[hunter5582]

It is not uncommon to see variance in platelet levels. Platelets can vary by as much as 100 in a single day based on what is going on in the body. It is the trend over time that matters. If you are seeing a steady increase over time that may or may not indicate progression. There are other factors to consider in assessing the status of your ET. These would include the status of your bone marrow morphology, JAK2 variant allele frequency, degree of splenomegaly, and other MPN symptoms. You would also need to assess for other medical conditions that could cause reactive thrombocytosis.

You note that your current hematologist is non-communicative. This is unacceptable medical care. It is the doctor's job to ensure that you understand what is happening with your condition(s) to ensure that you can make good decisions. Failing to do this is failing to provide appropriate medical care. If you cannot get the doctor to communicate with you then the doctor should be replaced. If you are not ready to replace this doctor at this point, then suggest you go to the next appointment with a written list of questions and insist on getting answers. You may wish to start with something like this.

1. How do we assess for progression of the ET?

2. Does the ET appear to be progressing?

3. What treatment options are the most likely to prevent progression? Note that you would need to set reducing risk of progression as a primary treatment goal. Some set prevention of thrombosis as the only goal. It is up to you to set your treatment goals.

You may also wish to get a second opinion if you still have concerns. It would be best to seek consultation with a MPN Specialist rather than a regular hematologist.

You can also seek to increase your base of knowledge on your won. MPN Voice has good information on their website and they also offer excellent MPN patient forums.

There are some informative presentations at this link. mpninfo.org/conferences/202... Suggest watching MPN Molecular Biology (Nangalia), Managing ET in 2025 (Bhave), and Long Term Outcomes (Kiladjian).

Wishing you all the best.

[Bear111 in reply to hunter5582]

Thank you Hunter for replying, I really appreciate it, you are right I need more information and am not going to get it from my haematologist. My platelets are increasing steadily, 392 in Sept 24, 426 in December 24, 432 in January 25 and currently 450, I may be more anxious and worried than needed, I just don’t know what to expect or what it could mean and lead to, thank you again.

[hunter5582 in reply to Bear111]

A variance of 58 is not necessarily clinically significant. It is well within the range that people experience as a result of what is going on in the body. However, given a history of a thrombotic event that went to the brain, your worry is understandable. It is worth noting that there is not a linear increase in thrombosis risk from 392 to 450.

Suggest that you have a discussion with a MPN Specialist about your risk level and what the treatment goals in your case should be. Note that the goal of PLT < 450 is not necessarily the appropriate goal for everyone with ET. People with ET need an individualized goal based on their MPN profile. Note that preventing thrombosis is about more than an absolute PLT number. It can also involve using the appropriate antiplatelet (e.g., aspirin, clopidogrel) medication and dose. You need expert guidance from a MPN Specialist to set appropriate goals and ensure optimal care.

Wishing you all the best.

[Bear111 in reply to hunter5582]

Thank you so much for sharing your knowledge, I take Warfarin and have very regular INR checks. I am looking into hopefully seeing an MPN specialist. You really have helped, thank you so much, take care.

[LeoTravels]

Hi Bear111,

Greetings from Sydney. I have a constant battle with my platelets which insist on fighting against the Hydroxy, I’m about 8 years in and platelets at 850. I take 1500 weekdays and 2000 weekends. I started at a much lower count and dose. My Haematologist is looking for other options but for now I can’t get them below 800. So yes, they do move around even on medication, well for me anyway. No side effects to the increase in Hydroxy by the way, don’t be concerned about increasing the dose - we are all different and you will only know by trying. It is important to control those rascals - just know that some of us are taking much higher dose and are doing fine

All the best to you.

[Bear111 in reply to LeoTravels]

Hi Leo, thank you so much for your message, it is really comforting to hear from other people living with the same condition, I am truly grateful.

Take care

[Garstongal in reply to LeoTravels]

My platelets seem to be resistant to Hydroxy (3x tablets daily) as well, so my haematologist added Anagrelide to the mix…still no decrease in platelets. I have now been put onto Besremi (for a couple of months I was on Hydroxy, Anagrelide AND Besremi simultaneously!!!) I have now discontinued the Anagrelide and am waiting to be weaned off the Hydroxy. Platelets fell slightly after the first two months on Besremi but because my platelet readings are like being a roller-coaster anyway, it’s too soon to tell whether it’ll work long-term or not. Here’s hoping…

[Bear111 in reply to Garstongal]

Thank you very much for replying to me, I really hope it works long term for you, please do let me know, thank you again.

[kamiilos]

Hi Bear111, platelets at 450 still seems to be in acceptable norm providing you are feeling well.Above comments are helpful to my case too as some of my blood counts are slightly above or below. My hematologist doesn't seem concern. But I will make an appointment with an MPN specialist.

I actually also suffered a brain clot but I am classified as PV.

Wishing you well.

[Bear111 in reply to kamiilos]

Hi Kamiilos, thank you for replying, it is comforting to hear from others who have had similar experiences, it really does make me feel less anxious, thank you.

[schmiller37]

Hi Bear - I was started on 1gm per day of Hydroxy at the end of 2023 - however my platelets were at 1,570 when I was first diagnosed. I am happy to report that even at 1 gram per day - I have no side effects - and I have manitained a platelet count of under 350 since. It is super frustrating if you cannot get the information you need from your haemotologist - I have been incredibly lucky - my team are amazing - I have Whatsapp conversations with my haemotology nurse. I would definitely - if you can - get a second opinion - but do not be scared about the increase in dosage of , should that be the right course of action. I really hope you find the answers and the right medication - do not despair. Its a complicated balance - you just have to get the medics to find the right one. Good Luck!

[Bear111 in reply to schmiller37]

Thank you so much for your reply, I am actively looking to see an MPN specialist to discuss my concerns in detail, I really appreciate you taking the time to share your experience with me.

[Fairydust1111]

hi there. I was diagnosed with ET and have been on hydroxy since. One 500 daily and as my platelets started increasing the doctor upped mt dose by one extra tablet per week until platelets reduced… it’s acase of careful monitoring and increasing anddecreasing meds as needs be…. A bit likeinsulin in diabetis…. Hope this helps

[Bear111 in reply to Fairydust1111]

Thank you very much for your reply, I do panic every time something changes and I think it is because I don’t get any information from my haematologist, it really help me listening to others experiences, thank you.

[Fairydust1111 in reply to Bear111]

You are very welcome I was told that I should live a normal lifespan with careful monitoring, so try not to stress 🥳

[Mieshie]

I did not have a good experience with HU when first diagnosed with ET 3 years ago. The side effects were horrendous so cannot comment on what happens over longer time other than in my case having to switch after 3 months to another treatment drug. Next was Anagrelide which was no better than HU. Been stable on peginterferon for 2 years.

I can comment on how platelet test values are constantly changing. I have been on weekly blood tests for nearly two years so frequently see CBC and CMP test results--all sorts of blood values in addition to platelets and related as in kidney and liver enzymes, potassium and state of HCT and hemoglobin. These are the most important for my situation which includes anemia, acid reflux, and slightly elevated blood pressure. I get the lowest platelet values in the early AM tests taken between 6 - 7, no food nor exercise, just some water beforehand. Later in the day after eating, dog walking, and stress builds up, platelets can be up 100-150K units. As others have noted, look for trends. Variables as in colds, stress, vaccines, some foods and timing of other meds I take can affect my platelet numbers. For testing, I have been consistent going on the same day, at the same time and to the same lab every week. My blood test values are pretty stable for that effort. Boring......but it works for me. Good luck to you.

[Bear111 in reply to Mieshie]

Thank you for replying, I am really glad your bloods are stable, I am hoping I am worrying for nothing and that it will sort itself out, thank you again.

[Crotchety2013]

Hi, BearIII, I took hydroxicarbonide 10 or 12x500mg for nearly 11years. I have PV jak2. And also had quite high platelets. Hydroxicarbonide worked well for a few years for blood counts though not for symptoms. Eventually hydroxicarbonide failed to control platelets anI changed to Ruxilitinid. At 2x 15g a day symptoms and blood tests are better controlled. Less brain fog, fewer night sweats, sharper between bouts. of fatigue, still very hot in night but feet boiling rather than on fire. Ha ve had monocytosis for over two years. I would say that hydroxicarbonide was better for me, symptoms wise than not being on it but over time it became far less effective at making ..me feel well and normal. Crotchety age78

[Bear111 in reply to Crotchety2013]

Thank you very much for your reply, it’s really good to know that there are other options as I’ve only been aware of Hydroxycarbamide up until this point, thank you for sharing your story, I really appreciate it.