Anyone living with Essential Thrombocythemia with JAK2?

78 year old woman Recently diagnosed with ET and JAK2 ,
Last week I experienced uncomfortable pain in my left shoulder BLADE for two consecutive days .
Went online and finally found a connection for ET -
the Spleen can emit pain thru some sort of connection with the left shoulder blade area. They suggested increasing water intake, which I did immediately and the next day it was gone 🙂 I reported it to my Dr's RN and she scheduled spleen scan for next week. If nothing appears, at least we will have a base line scan for future reference, she said.
Seems like a new surprise every day with this ET challenge. Please know that reading your submissions on this blog somehow calms me. I think it's just good to know I'm not alone in this journey. Thank you so much.

@djlom15 it is great that your treatment is working for you. Are you donating blood? You should probably discuss that with your blood bank. I don’t think we are supposed to donate blood.

@kat260 I’m 79 got my final diagnosis last week. It is Polycythemia Vera(MPN NOS-with Neutrophilic Leukocytosis) with the help from 500 hydro y urea my platelets have dropped from 699 to 460 in 30 days. I was very greatful for that. I have had my blood work done every two weeks but I’m sure it will go out to one month. I have had my spleen testing come back normal, bone marrow biopsy come back which gave my oncologist this final diagnosis. I will give one pint of blood monthly til he tells me to stop. Otherwise at this point I feel very normal. I have always had a very low blood pressure reading. I’m also on one 81 aspirin daily. And am told to drink at least 80 ounces of water daily.

@kat260 I’m 79 got my final diagnosis last week. It is Polycythemia Vera(MPN NOS-with Neutrophilic Leukocytosis) with the help from 500 hydro y urea my platelets have dropped from 699 to 460 in 30 days. I was very greatful for that. I have had my blood work done every two weeks but I’m sure it will go out to one month. I have had my spleen testing come back normal, bone marrow biopsy come back which gave my oncologist this final diagnosis. I will give one pint of blood monthly til he tells me to stop. Otherwise at this point I feel very normal. I have always had a very low blood pressure reading. I’m also on one 81 aspirin daily. And am told to drink at least 80 ounces of water daily.

@jodyjazz I've noticed most people on this site have started treatment earlier. I'm in Australia and was diagnosed with ET Jak2 in August 2025. Here is what my haematologist advised me. Starting treatment differs by country, Australia is more "conservative", starting around 1000, the US are more "aggressive" starting around 500. It's all about the risk factor and how it's determined, ie. stroke risk increasing from age 60 and then factoring in other contributors like high blood pressure and/or heart issues. I am 60, on medication for high blood pressure and am in the medium risk for heart disease. Both are being managed. I haven't had any previous blood clots. My platelets are at 920. Assuming it's standard everywhere but normal range in Australia is between 150-450. He also said the 100mg aspirin renders half of the platelets "helplesss" so my count is more like 460. I did not have a bone marrow test so not sure if that shows other information to factor in when to start treatment. I have blood tests every 8-12 weeks. I'm really on the cusp of starting treatment and was given the choice to start now or wait to see my blood results later this month.

@kat260 JAK2 burden diagnostic test can be repeated to track the effectiveness of your treatment. I am currently looking for the billing code to get my insurance to cover it.

Hi. I have ET Jak2, diagnosed August 2025. Just wondering if anyone here is using Interferon as their treatment? I have gut and a few other health issues which are being generally managed but it seems as I age, (60 yrs) more arise. I am worried about the potential side affects of using Hydroxy as mentioned in this group, but I am also worried if it will bring on more health issues. My platelets stayed around 870 for 5 months but they have jumped to 920 in the latest blood test, 2 weeks ago. I take 100mg daily asprin. My haematologist has advised I will start Hydroxy when my platelets reach 1000, although I can start now if I choose to. I asked him about other treatments and he mentioned Interferon. He advised the treatment is just as effective although usually used in younger patients, conceiving or pregnant women or those that can't tolerate Hydroxy. It is not a chemo drug, it's an antiviral so works by stimulating the immune system. It's also administered by injection. As with anything there are side affects. He mentioned flu like symptoms, nausea and fatigue which can affect quality of life. I've read that depression is another side affect and 20-30% of patients stop taking it due to the side affects. I'm thinking of trying it first and would love to know if anyone here is using it and what their experience is. Thanks

@kat260 I have just gotten the date (8 th of April) of the appointment with this renowned Professor and can’t wait to share his opinion with you and the community, because he always emphasizes that interferon might an preferable option even for older 😅60 years old people because his studies has shown an remarkably change in the high of the mutation. He pronounced that 80 percent at least of the patients has a lower rate of mutation vaf and up to 4o percent a complete remission. And they have shown less incidents in terms of heart attacks or strokes.

@jodyjazz Starting HU depends on 3 things: Driver mutation, age, and clot history. Some young folks who have never had a clot and are CALR+ are started when platelets are 1,000. Patients over 60 with JAK2 and a clot go might go on HU at 500.

Everybody goes on aspirin, because that's the best preventive for clots. And no clots, no HU, at least for awhile
Patients who cannot take aspirin often take a substitute blood thinner.

I am CALR+. At 64, I was started on 500 mg of HU daily when my platelets started creeping up to 800 pretty fast. I've never had a clot, but if platelets go over 1,000 the docs start worrying about your developing von Willebrand's Syndrome, which can cause bleeding.