Hi. I'm 72 and have been under treatment for Cal-R mutation ET for almost four years. Just want to say: I am tired of being told I'm old! AGE IS ONLY A NUMBER! I believe the risk equation should include lifestyle choices like healthy diet, not smoking, getting exercise, and limited use of alcohol. Oh, and how about longer lives due to paying attention to health info like what's supplied on this website.

Thank you Mark…I know we are all individual…but we seem similar….Having just been diagnosed and fit and otherwise healthy …as well as symptom free. I will be declining in the short term…reading up on some newer options but not sure how an available they will be in the UK .

Hey Dan thank you so much for your information. I’m away to look through it all 😊

Hi Elaine - there is no correlation between thrombosis (clotting) and platelet count. The risk of thrombosis is due to the JAK2 mutation, age, and cardiovascular health factors. However, high platelet counts over 1 -1.5 million increases the risk of bleeding. I'm 58, diagnosed ET/JAK2 this year, and I only take aspirin. I'm planning on starting Interferon next year, either Pegasys commercially or Besremi (clinical trial). I encourage you to ask your physician about Interferons. They don't just decrease platelet counts, but also reduce the JAK2 mutation (allele burden). A clinical trial called EXCEED ET is currently recruiting ET patients to study the use of Besremi for ET. It is an interferon that is FDA approved for use by PV patients. Besremi is generally better tolerated than Pegasys and has less frequent injections. I encourage you to consider this option. This is the address for an excellent article on Interferons https://pubmed.ncbi.nlm.nih.gov/36075385/

So far I'm declining also with 508 plates. I feel great, once I started aspirin my issues with fatigue, headaches, etc. went away. I'm in good health but I'm 62 and have jak2 and mpl mutations and still declined for now. I'll reevaluate my situation with my Dr.after my next appointment to see platelets and other levels and then decide. Remember everyone's situation is unique so follow your Dr opinion or get a second one like I am. I am seeing an MPN specialist in April. That was the soonest appointment available at Penn Medicine in PA.
Good luck!