Anyone living with Essential Thrombocythemia with JAK2?

@przybillan I had dizziness, shortness of breath, blurry eyesight and other eyesight issues, brain fog, peripheral neuropathy, muscle stiffness, joint pain and muscle cramp. That is quite a list now that I look at it. However, I did not and do not have fatigue, which I understand is one of the most common symptoms and a really tough one to cope with. I also have pretty bad sleep, but it has improved since I pursued treatments for my dry eyes and mouth. I probably wake only half as frequently now, but that is maybe 3-4xs a night.

@eloise999
Thank you for your advise.

@eloise999 I’m 73 with ET (no JAK2) and have been on HU for more than 30 years. I had been on 500 mgs/day for years but approximately 2 years ago my H/O added an additional capsule 3 days per week (I take both in am). I’ve never experienced side effects that I can attribute to HU - more likely just changes due to aging (cholesterol, GERD). Within a year or 2 of being diagnosed with ET, my H/O did find I don’t absorb B12 so I give myself a monthly injection but, at least at the time, neither doc felt that the B12 and my ET were related altho my PCP did say “another condition that older people get!” Like everyone else here, I don’t know what to expect going forward but I’ve always had an upbeat attitude toward life so hopefully that continues. In any case, discovering this site and sharing experiences and concerns with others has been reassuring: no one is alone.

Yes, the Mayo site is great. You are lucky you are so stable on HU. Your dose is still quite moderate. I suspect the higher the dose the more likely or worse the side effects. I agree with your doctor that not all diseases we get are going to be related to ET. Some diseases are just coincidental and others an inevitable result of aging. Take care!!

Yes. I’m progressed to blood transfusions every week.

Welcome to Mayo Connect, @akdixon5 It’s not very common for patients with Essential Thrombocythemia to have weekly blood transfusions. This is a blood disease where the body makes too many platelets. From what you’ve mentioned, it sounds as though you’re also experiencing a severe decrease in red blood cells.
How long ago were you diagnosed with ET? Has your disease progressed to another level of disease such as Myelofibrosis? Are you currently taking any medications for ET?

Wondering has anyone had lower back pain with taking HU ? Doctor decreased my Hu from 500 mg x 7 days to 3 days a week has anyone noticed side effects that I hadnt had in several months comming back when dosage is reduced. I am 18 months on the HU.
Thanks