I was diagnosed with ET back in 2012 (I was 55). I had high platelet counts (700s). I was immediately put on Hydroxy and the only side effect I've ever had is a very occasional sore tongue. I am currently on 1000mg 5x a week and 1500mg on Mondays and Fridays. I was very active before I found out about ET, and nothing has changed. I have a really good diet, eat some of my own garden food and play real football (soccer) at least once a week, with tournaments 3x a year in women's 60+. When I recently found out about the CALR+ I was relieved since your chance for clots in general is lower. I take some herbs for lower red & white blood cells, maca is said to perhaps help your red blood cells carry more oxygen (hemoglobin) and astragalus (a Chinese herb) can help block colds and viruses. I work at a health food store in the wellness department around folks who are sick and I rarely get sick.
Hydroxy with ET, CALR+: I was diagnosed with ET... - MPN Voice
Hydroxy with ET, CALR+
Hi GardenGal - I'm really glad to hear this - for you and your own life, and for someone who's about your age, and also has ET. Like you, I was active pre ET diagnosis and remain so, and so far have had no bad reaction of any kind to hydroxyurea. You're now the role model of this all for me! It's great to hear from one of us who has an MPN and is on hydroxy, living active, fit and side effect-free lives. Thanks for your post.
So good to hear this, I am also ET CALR and have been on hydroxycarbomide for a few months. I am 49 years old and was incredibly reluctant to start with the meds as have always tried to live a healthy and active lifestyle. Am really happy to hear positive feedback Penny
Hi GardenGal
Great to here you are getting on so well. My question is why did the Dr put you on HU immediately? I am presuming you are from the UK, where I thought 60 was the age to commence HU? Here in NZ was 65, but now there is no rush at all to start meds except aspirin, which I agree with as thrombi are our biggest risk factor. My Dr (haem) is not concerned at all about my platelets being 700, my highest being 970 then down to 601 being the lowest since being diagnosed in 2015. I continue to work full time shift work and try to keep as active as I can when not at work, along with a healthy diet. Just to add, from my Haem, Cardio Vascular health is the most important thing with this disease, this is your GPs job to keep this is tact, with annual check-ups. Keep up the good work!
Kind regards
Lyn NZ
I was put on HU because the diagnosis quickly made was ET, and I could not take even baby aspirin due to also having the diagnosis of ulcerative colitis (I had a flareup in 2012 after taking that baby aspirin). The thought was that I was JAK2+ (turned out not to be the case). The 2nd hematologist I had was extremely upset that I hadn't had a bone marrow biopsy. That was done, then he seemed to suggest I had early stages of MF, this (thank goodness) proved to be wrong. Now I have an MPN expert who tested for all the mutations. I am in the US and luckily have good enough insurance to over the expenses.
Just diagnosed with ET calr positive 39 yr old male
Itching (pruritus) with ET?
Why same treatment for PV as ET?
ET......HYDROXY SYMTOMS
ET and PV
