Like wise I got diagnosed 7 years with relatively normal lifestyle as long as I continue oral treatment. I am proactive with my consultant team and MPN support really helps explain pros and cons regarding treatments lifestyle changes and future clinical studies, trials. On relatively young at 40 and know side affects from anagrelide may impact over next decade but remaining positive and enjoying family life helps immensely 

Hi I am 42 ET 700plt still on aspirin:)

I was diagnosed with essential thrombocythemia in 2004, I take 500mg of hydroxycarbomide each day, along with aspirin and a gastro-resistant medication. I  see my haematolgist every 3 months, for a blood test and a check-up. My blood count is stable and controlled. I was just told that my body (bone marrow) overproduced platelets, a rare condition. This is the fist time I have found this forum, so nice to find other people with this condition. Your posts explain the tiredness I feel sometimes.

Hi NM9309

I took Anagrelide from 1998, as I agreed to be on a trial for it.  Unfortunately, in 2000, I gradually became short of breath with swollen feet etc, as I had developed a heart condition and the anagrelide was immediately stopped. Apparently, as a result of the trial, another patient in America also suffered heart damage - my heart was enlarged and the valve did not close properly in the ventricle, allowing blood to bypass it.  Three months later I started on hydroxycarbamide with no apparent subsequent side effects and within 2 years, tests showed that my heart had reverted to the 'low end of normal'.  Investigating further, I discovered that those on Anagrelide were recomended to be given heart checks before they started and regular checks while taking it.  Hopefully, my experience, which was reported, has helped others to take Anagrelide without adverse effects.

Hi I’m 46 and have just been told I may have Essential Thrombocythaemia after an MRI on my head & repeat blood tests my platelets are over 800 and not coming down.   I’ve got to have a bone marrow sample taken on 25.3.19 has anyone else had this done?   It’s all a bit of a shock so I’m glad this website exists to help understand what others are going through with the condition.   

Yes I needed bone marrow sample taken, while I was being assessed at the Haematology clinic.  I had to lay on my stomach and a local anaesthetic was injected into my back, on my backbone just above my waist..  Then a nurse stood by me and the doctor took a sample.  I cannot say it didn't hurt, but it was bearable and only lasted a minute or two - a bit like a bad toothache in a different place.  From this sample they can confirm it is ET.  My platelets were up to 800 when they started treating me and if you ignore my earlier post about the initial problem I had, subsequently I have been fine.  One tablet once a day for the last nearly 20 years (and until I fall off my perch).  I am living life normally and have no ill effects.  I visit the Haematologist once every 4 months to have a blood test - check all is well - and collect the prescription for the next four months.  I am actually very glad they found out that I had ET as some people have it without knowing, which could make them liable to strokes and heart attacks, because their blood clots too much.  Have courage and I wish you well.

Thank you so much for your reply it’s very positive to know I will be able to carry on leading a normal life as I have a very active job which I love.   Best wishes 

Positive thinking helps us all through life.  I do hope that my expereince is repeated for you and that your treatment and care will be as successful as mine.  All the best.

Thank you very much :)