Hi I’m 53 years old , I had a blood clot last February after that Dr discovery jack2 mutation in my bloods test my platelets high until 576
Dr putted me on Eliquis 5 mg twice a day and did a bone marrow biopsy it results in ESSENCIAL TROMBOCITOSIS
Now I have to take Hydrea 500 mg a day
I began taking Hydrea last nigh
Any suggestions?
Thank you.
Wow your platelets are not much higher than normal! 450. He did rush you onto Hydroxy. Especially as 60 years is the WHO recommendation. Maybe because you have had a blood clot? Can I ask where and what was your symptoms? Thanks Lyn.
Ps what is Eliquis? Is it like Aspirin, anticoagulant?
It is important to talk to your doctor about hydroxyurea and understand how it works and why you need to take it. It is a toxic medication and there are precautions you need to take. There are side effects you need to monitor for as well. There are other options for treatment besides hydroxyurea that you can ask your doctor about as well. PEGylated Interferon and Ruxolitinib ate two other possible treatment options. With your platelet levels being relatively low, I am thinking your doc opted to treat more aggressively than is usual due to your blood clot. You may want to review your treatment plan with a MPN Specialist as many doctors do not have much experience with MPNs. Here is a lsit.
Hi. After near death from numerous clots in both lungs, my MPN was discovered. I too am on Eliquis & Hydroxyurea. While initially very afraid of Hydroxy, I’ve discovered in the 5 years I e been on it that it controls my platelets well without side effects. Good luck. Katie
Thank you.
Hi. I also was diagnosed after a portal vein thrombosis...my platelets were near 1000, age 43, 2 yrs ago. I was given the choice of meds, but chose interferon. No side effects. Platelets came down very quickly. Still on warfarin for life for the blood clot...☹️
Good luck. C
Have a look on MPN voice for information on your meds, it's a great website & really informative. As said your platelets are high but not massively & in patients with no previous thrombotic events & low risk (normal bloid pressure, weight, cholesterol) at your age it would probably just be an aspirin type medication byt in your case as you have had a blood clot the dr is following the recommended course of treatment to reduce your risk of further clots. Blood counts are an indication of risk of clots but it does not always follow that those with the higher levels are the ones that have clots.
I don't have experience of the meds but ensure you have regular monitoring for the first few months to ensure you have the correct dosage & are handling any side effects. Remember if something doesn't feel right to get it checked, have you a contact number for your Specialist nurse at the hospital. They are often the first port of call. Please also be mindful of symptoms of blood clots, being on medication doesn't take the risk away completely so anything that seems like a clot needs checking completely.
Good luck with your first few days.
I to have blood clots around the liver which is diagnosed as budd chiari ,I also have pv might be worth finding out too.
hello Tcperez, welcome to our forum. I would suggest that you have a look at the information on our website mpnvoice.org.uk, particularly about ET and Hydroxycarbamide, I am sure it will help you. It can be quite a shock when you are first diagnosed to understand it all, so take your time to read as much as you can, and ask any questions you have, we are all here to help and support you. Best wishes, Maz
I also had a clot in my portal vein earlier this year and was diagnosed with ET with Jack2 mutation at 49. My initial diagnosis was pancreatic cancer so it was with some relief when further diagnostics suggested MPN. My platelets at the time were in the 700’s. Because of the clot I was initially on clexane injections then eliquis 5mg bd. I was on HU for a month to reduce platelet count and HCT and am now on weekly interferon injections and eliquis 5mg bd.
Thank you for you info now I’m feeling I’m not alone.
Hi I am 56 and have ET. My last platelet count was 1200 but still on 'watch and wait' I take aspirin every other day.
Hope you stay well 
HI. I was 45 and was rushed to hospital with a pain in my gut. After two weeks I was transferred to a well known hospital in Melbourne Australia. I also had a blood clot that was found at this hospital in my Portal Vein. ( Budd Chiarri) by this stage there was a bit of damage done in my Liver. I had a stent placed into my Portal / Hepatic Vein. I have ET/PV Jak 2 and on the same medication as yourself..I also take one aspirin in the morning .. It comes close to two years ago that I was diagnosed. good luck
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