Anyone living with Essential Thrombocythemia with JAK2?

@claire1776

While I'm grateful to HU for relieving my ET fatigue and headaches, I know it also lowers my resistance to infections.

So I wear a mask when I have to be around a lot of people in indoor settings. I also use hand sanitizer frequently.

Most of all, I keep my flu and Covid vaccinations current. My oncologist assured me that these vaccines, being inactive rather than live, are safe for me.

Thank you Jane!

@jodyjazz
I just looked and Astepro is Azelastine which I have a prescription for and use sometimes. and Sometimes it works.

Hi! Sorry to read about your neuropathy pain. I’m not certain if you’re asking questions about cymbalta or Hydrea. I was initially scared about the potential side effects of Hydrea. However, I’ve been taking it for 19 years and have had no problems once the doctor found out which dosage worked best for me. I started taking Hydrea at age 50 and I am now 69 years old. Best of luck to you!

I have ET with Jak2. I've experienced bone pain 3 years before ET diagnosis. I finally went to Pain Mgmt doctor who prescribed tramadol, since tylenol does nothing for me and I'm not suppose to take NSAIDS. So far I've had 2 nights without pain which I've endured for 8 years now. My oncologist never prescribed or thought to send me to pain mgmt doctor, he just said to take tylenol which I told him does nothing for me.

@writernana Hi, I'm 64 and have ET with Jak2 and had alot of joint pain and developed neuropathy. I asked my doctor if I could use Hemp Oil as I am taking Hydroxycarbamide and a low dose aspirin. He said it would be fine. After 3 days taking the Hemp Oil I had no pain or neuropathy. I can sleep at night no burning pain or restless legs. My joints don't hurt and I am more active. I also do the Keto diet, which cuts out alot of sugar which can inflame the body. To experience no pain is life changing. I still get fatigued but living with no pain is magic. I realize not everyone can take Hemp oil but if it's approved by your doctor it is worth trying.

Sending a heartfelt thank you for your responses and encouragement!
Sharing your experiences reminds me that I'm not alone
on this journey. Hopefully today is a good one for you!

@claire1776
On my 78th birthday last year, I got Covid for the first time, and it was bad. But I did not take Paxlovid, I just toughed it out, and I'm still here to for my 79th birthday next month. I was always getting flu shots, and all the other vaccines...........but this year I did not get any. Not making a recommendation just reporting my experience.

I am a 74-year-old widow. In 4/21/21, I was diagnosed with ET. My platelets at the time were 1000+. After education at my Cancer Center, I learned the mutation of my JAK2 V617F acts like a broken light switch that stays "on" signaling the bone marrow to continuously pump out blood cells even when they aren't needed. I began taking Hydra—a 500 mg capsule a day. Numbers didn’t go down as much as the Dr wanted. I increased Hydra to two 500mg capsules daily. Numbers went down then up again. So, it went, each time Hydra was changed. That was the case until 3/28/26, when numbers were slowly going back up. I knew what the DR was going to say. At that point, I told him that I didn’t want to take more then two 500mg Hydra daily as side effects were too much. He knew that in August of last year, I had a hip replacement and some of the leg pains I had contributed to Hydra went away. I explained that the side effects got worse the more Hydra I took and it affected my quality of life. I know that I could have it worse. I’m sure a lot of you have had some of the same side effects…thinning of my hair and nails, gas, headaches, fatigue, brain fog, ankle/shin pains, neuropathy hands and feet; and if not hydrated properly dehydration pains, mouth sores, and other side effects that would come and go. That was another surprise as to how some side effects would come and go with out rhyme or reason. I also learned that stress does play a roll with ET. In March, 2026, the Hematologist (who I like) said he could put me on a different ET drug, called Anagrelide .5 capsule. As we know, there are very few drugs without any side effects. I had education on this Anagrelide, then an EKG, then a complete blood work up and then was told I’ll need blood work done 1-2 times a week. I will be seeing Dr at the end of this month to discuss results. My platelets dropped by 100 within 5 days and have gone down a few more after the 2nd draw. I felt better on this RX. Wondering if that could be the placebo effect? We will have to wait and see. I learned from pharmacist that Hydra would be out of my system in 3-4 days—but symptoms would leave little by little. With my new hip, I learned that I had to teach my muscles new memories. It may well be the same after withdrawal from Hydra—who knows? We will play the wait and see game just as I did with Hydra. I know that having a well-oiled Cancer Center and a support system that includes more than family are part of the reason my mental attitude is good. Just like with hydration, water is needed. The same with stress. As an ET patient, I know I need to reduce stress by using humor, mental/spiritual/physical insight, and lots of love for myself. Not looking back is a great mantra to have—as there is no possibility of a would have, should have, or could have. We have tomorrow

Thanks. Have you ever heard of Anagrelide? Wondering if anyone on this cite has heard of it.