Essential Thrombocytosis (high platelets) - Blood and Blood Vessel Message Board

Nicole326 · 12-07-2004, 12:31 PM

Hello. I am 34 years old and was diagnosed with ET almost 4 years ago. I was unaware of high platelets and it occurred almost overnight! I was confused and sent in for a bone marrow test to rule out cancer. I was told I had ET and had to go on Agrylin. I am up to 2-3 pills a day. My platelets have been going up though and I am not sure why. I am looking for anyone else who has this disorder to hear your experiences with this medicine or an alternative.

Also, does anyone know what causes this. I was told.. "No one knows" - that was encouraging

I would appreciate any feedback!

Thanks.
Nicole

undercoat · 12-09-2004, 07:09 AM

I too have essential thrombocythemia. I am 43 and my platelets are between 577 and 730. I too had a bone marrow test which confirmed that I had ET.

Why are you taking medication? Did you have a thrombotic event, ie, a heart attack or stroke? You should read up about ET as thinking now is that if you have a platelet count of less than 1500 and are low risk (ie, young and have not had a thrombotic event) then you should be treated with low does aspirin only. I can't take aspirin so I take Plavix instead. My platelets were picked up on a routine blood test 18 months ago and I don't have any symptoms. How high are your platelets?

I have been through all sorts of hell worrying about platelets, but feel a bit more relaxed at the moment. I realise though that if my platelets started to climb, I would be totally freaked out again. It is stressful to go to the haematologist and I worry the night before. They don't know why people have ET and of all the MPDs it is the best one to have - although I would rather not have any and not know anything about it.

I would be interested in knowing how things are - if your platelets are going up, maybe it is time to have another BMB - but hey - I am just a patient, so be guided by your haem.

EMG · 12-09-2004, 11:54 AM

My sister has ET. She has gotten good help from the Mayo Clinic in Rochester, MN. she takes a different drug. sorry I dont know how it is spelled but sounds like ''anakrilide''. her count get up over 500,000. she has had this for 20 yr & it has caused many other health issues.

regor201 · 12-12-2004, 08:47 PM

500,000 or 500 for short is not a particularly high platelet count. Most Hematologists would not put parients on medication at this level. What kind of health issues do you think were caused by the ET?

stephiem92 · 02-10-2005, 07:47 AM

Hi there! I also have ET and am 48 years old. I have had it since at least 1992 but think it goes back further. I have not had many health issues with it. My platelet count has risen substantially in the past 3 years which really bothers me! To reiterate what someone said on an earlier post, usually doctors do not treat someone with a count of 500,000 unless there has been a thrombotic event or some bad symptoms. I am holding off on treatment for as long as I can. I know that some are in disagreement with this opinion but I really don't feel comfortable about the available meds. for our condition. Up to this point I have been feeling fine and take 1 baby aspirin a day.