Anxious and concerned

[Bear111]

Hi, i was diagnosed with ET in October 2019 after feeling awful for a long time, eventually a blood clot on my brain was diagnosed followed by a positive JAK 2 result, i have been taking 250mg daily of hydroxycarbomide and warfarin since 2019, i have had my full blood count carried out today and my platelets have risen to 419, they have been around 300 -360 since diagnosis, i am now really worried that my ET has progressed and am freaking out as i cannot see my haematologist until Saturday, can anyone help with some advice please? Can this happen?

[Mostew]

I understand how worried you must be . Platelets fluctuate so that sort of rise from one test may not be any indication of a problem. If you had it done the next day could have been lower.Let us know what haematologist says . Glad you have appointment soon

[Bear111 in reply to Mostew]

Thank you so much for taking the time to reply to me, i had 3 silent migraines last week and wonder if that may also increase platelets, i shall try not to panic anymore than i already am, thank you again for your reply.

[hunter5582]

It is normal for platelets to cycle by as much as 100K in a single day. This is triggered by what is going on in your body at any given time. We never make too much of any one lab result. It is the trend over time that matters.

A jump from 360 to 419 is not clinically significant. There is no corresponding increased risk of thrombosis associated with the increase at that level. You can afford to just watch this for a while. Your doc will likely tell you the same thing.

Note that the migraines and increased platelets may be related. The things that go in on the body that increase platelets (reactive thrombocytosis) include inflammation, injury, illness, bleeding, and stress. It could be the same thing triggering both and/or just the pain/stress of the migraine triggering a reaction.

Controlling inflammation is a key part of managing a MPN. So is managing things like migraine, which are a MPN microvascular symptom. Just as a side bar note, I get a type of migraine too. I have found one of the CGRP Inhibitors (Ubrelvy) to be very effective. It stops my episode in about an hour. There is also an injectable form that can prevent the migraines from occurring. My niece is using Ajovy, She says it has transformed her life.

Hope you get all your concerns addressed ASAP.

[Bear111 in reply to hunter5582]

Thank you so much for your reply, i really appreciate you taking the time to respond with kind words.

[Aquinas in reply to hunter5582]

I must thank you also for your reply , Hunter. You are always both generous and highly informative in your posts. May God reward you for your unfailing kindness and optimism.

[Mazcd Partner MPNVoice]

Hi Bear111, completely understand that you are anxious about the rise in platelet levels, but as Mostew and Hunter have said, the levels do go up and down, they don't stay at the same level all the time, so please try not to worry too much. Best wishes, Maz

[Bear111 in reply to Mazcd]

Hi Maz, thank you very much for responding to me, I really appreciate your time, the replies are helping me to relax a little, many thanks

[jillydabrat]

Hi Bear 250 mg of Hydroxycarbomide is not a big dose. I have 1000 mg a day and have done for 7 years. You may need your dose tweaking until your results are satisfactory. I have been on warfarin for over 20 years after 3 separate DVT’s. Don’t be panicking my lovely, just expect your dose of Hydroxy to be upped at your next consultation. If you are really worried I would call your consultant but, really, there is nothing to worry about at the moment.

[Bear111 in reply to jillydabrat]

Thank you for replying to my comment, I cannot believe how kind people are, thank you so much for your kind words, fingers crossed all will be okay.

[Janis12]

Hi, my platelet levels cruise between 400-500 and my consultant is happy with that, he does not want to increase the dosage of Hydroxy because it would have an adverse effect on my other blood cells. If he is happy, I am happy although I would prefer to have your readings but we are all different. I hope your anxiety gets under control soon, it can be quite destructive .

[Bear111 in reply to Janis12]

Thank you very much for your comments and advice, I really appreciate it, anxiety is unfortunately something I often have spells of, many thanks again.