Anyone living with Essential Thrombocythemia with JAK2?

I feel your pain. While starting my journey saw the Dr every week for maybe a month. after starting HU I have not seen her since the June 1st will see her at my next appointment on November 19th. How can you tell them anything . The first symptom I had was pain and burning in my calf.the Dr told me it was something that happened to old people. From then on this web site is my go to . I have had leg and hip pain and one pre cancer removed on my nose. This mess is scary . My last blood work my platelets were 297 which I think should help me get a reduced dose as I still take 500 mg 7 days a week.

Have a Blessed Thanksgiving

@lisanell I’ve been taking HU for 10 years (1000 to 1500mg daily) and it definitely caused redness around the ankles as well as ankle ulcers if my dosage went over 1500mg. Even under 1500mg I had to be very careful about scraping my ankles. These ankle wounds would take a while to heal and would require careful attention. Trust me these symptoms are HU related. I’ve been off HU for 8 weeks and my ankles are no longer red and an ankle ulcers I got cleared up quickly.

@maryandbud I was taking generic HU. Thanks for your response and encouragement.

@lisanell

Were you taking Droxia, the name brand, or the generic HU? Congrats on your determined efforts that obviously paid off. It's not enough that we have this condition, but when we have to "prove" the horrible effects that we live with before a doctor believes our situation, that is unacceptable. Think of those who are not a brave as you and accept the effects of the drug because the doctor did not acknowledge the problem. There should be some type of response available to this type of situation. However, right now, the only option is to find another Hematologist. Again, you did well, I hope you find the answers, if not try to look elsewhere.
Best of luck to you!

@nohrt4me Oh, friend, I think we're all on the ledge right now. My Medicare Advantage plan is being discontinued, and I have to find another one, hopefully one that won't cost too much or land me in a different network and make me find new doctors. I keep reading dire things about the collapse of Social Security in seven years. And the local food bank is trying to goose its donations as it has seen a 150 percent rise in need. Bright spot: My husband called the VA expecting a stone wall, but he got a real live person first try who told him exactly what he needed to know about his death and burial benefits and took a few minutes to chit chat cuz they were on the same class of destroyer in the Navy. Very grateful for that bright spot!

@janemc I had what I think was an extreme autoimmune reaction (joint / tendon pain and stiffness, muscle weakness, including difficulty swallowing and severe swelling with red sores on ankles) after taking HU for 1 month. My hematologist said he didn’t think it was possible that my symptoms were caused by HU, but by another medication. I stopped both for a few weeks, but restarted HU after my platelet count doubled. I then had a similar reaction just a few hours after taking the second daily dose. I saw him a few days ago for a follow up, and he finally said he was going to believe me! So big of him! But at least I don’t have to continue looking a second opinion. Now he is hopefully going to work with my rheumatologist to come up with a treatment plan. They are considering Jakafi, but will probably have to try anagrelide first.

Thanks for hauling me back in from the ledge, Jean.

@janemc Droxia, the brand name drug, is subject to US tariffs. My pharmacy uses generic hydroxyurea, and generics are not subject to tariffs right now. However, the political situation with countries that supply generic prescription meds is fluid. They could be tariffed or the countries that manufacture them could reduce supplies to the US as a retaliatory move. Your pharmacist can give you info about what med supplies look like in your location.

We each experience ET and HU differently.

But we all have one thing in common: When we tell our doctors about issues we're experiencing, we're dismissed.

I for one am going to acknowledge my symptoms (fatigue, headaches, congestion, constipation), try my best to address them, and not expect myself to be brave and jolly every minute of every day.

I am glad to take HU, because I don't want to die of a stroke, or to deplete my bone marrow. But I refuse to say that ET is a walk in the park.

HU comes from China, India and Europe, so every capsule is subject to punishing tariffs. Dramatic price increases and reduced availability loom.

I can totally identify with your concerns and was going to post similar concerns as well. I have had ET with JAK2 since 2014. My husband had been diagnosed with PD prior to that and I was totally focused on his well being. I thought of ET as a blood disorder and not a blood cancer and kept moving forward. Throughout the years my concern was to limit the about of Droxia (name brand for Hydrea) taken along with the .81mg aspirin. I challenged my H/Os but slowly increased levels when necessary. I did find out that some H/Os feel that the 450 "normal" platelet level is on the low side and have agreed to consider a higher threshold. My count platelet has always been above 450.
My sweet husband passed in 2021 from PD, and my life as caregiver suddenly changed and grieving began. A year later I relocated to another state to escape the memories. At that point my platelet levels began to fluctuate a great deal. Since my weight was low but OK, my diet was good, and I remained active, exercising, etc. the H/O attributed the platelet fluctuations to stress. This past year I developed a noticeable hair loss problem, again attributed to stress and age. I mentioned my tiredness and hair loss, etc. to my H/O and wondered if the Droxia was contributing to my situation. Again, it was not considered part of the equation. I also have IBS and have been experiencing issues with that as well. I will be seeing a gastroenterologist in the near future.
I am currently taking 800 mg of Droxia a day and my last platelet count was 785; I am due for bloodwork soon followed by a discussion on a medication adjustment. How can that amount of a chemo drug not affect my body after taking it for over 10 years. The directions tell us to handle the medication carefully, wash hands after touching, avoid breaking a capsule, etc. How can ingesting this medication for many years not have a negative effect? I also would welcome a response from the Mayo Clinic on this topic. I am sure there are many others who have similar concerns as we do. I did hear that there is a new treatment for ET that was mentioned in August 2025 that I need to research. However, I do not know if it also applies to a person with ET and Jak2. If anyone out there has any further information on this possible substitute for Droxia, please respond.
Finally, I was told at my local CVS that Droxia is no longer available and the last batch they have expires in March 2026. Another issue to explore immediately. I also would like to hear from you and compare notes at some point. Thank you for opening this discussion, I wish you the best possible, and hope to hear from you.