Hi Elaine
I am being monitored for ET with jak 2 gene mutation and diagnosed 1 1/2yrs ago.
I am being monitored on a 3 monthly basis and on 75mg of aspirin. I am down in Sussex.
I have some joint pain but not keen to go on these heavy drugs until I really need to and there is pressure to take them. Aspirin does some damage too I have read but I am very careful to take it with meals . Tried omiprozale to protect stomach lining but had an allergic reaction to it.
Being monitored can feel containing but it can also make you more anxious . Blood counts change daily normally so if you don’t know what you are looking at it can make you feel anxious. Also I am 69 and the danger is that aches and pains could be age and diet related not the et. Everything can get put down to the et.

I think it is a big shock to find out about this disease. I have found it really calming and grounding to read up on this and get different views. The specialists in America and the lectures they give you can see on you tube. I think it sounds good that you have no symptoms yet at 600. You can ask your doctor to refer you to Heamatology if that helps.

But in the end I feel I have decided to resist pressures to take these heavy drugs that can from what I have read give you side effects which are worse than the et.
Aspirin at least is a way of lowering the risk of blood clots which is the main concern.
Sorry this is a bit rambly. Hope you continue to be symptom free for ages.
Best if wishes Carolyn

Hi Carolyn,
Thank you so much for your reply ….I realise we are different…but your response is reassuring that someone else has resisted the strong medications with potential side affects. It was a haematology consultant that gave me the news a few weeks ago. I hadn’t been to see the GP for years and asked to have a blood test just for a general MOT - she was reluctant because I was well, but went ahead to pacify me.
This was the shocking outcome for me ….In some ways it’s good to know ….but in others I wish I’d never asked !!!

I do not have an answer but I am experiencing the exact same thing…I’m female 65 and never sick…I am overwhelmed with this news.

Happy Wednesday

I would be happy if my platelets were in the 600's. That's where I was last time I had my bloodwork. Hydrea is a VERY toxic drug, and if you can put off taking it, that's what I would do. I have my dose down to every 3rd or 4th day to help prevent the side effects. Next step will be to get off of it.