Connect
← Return to I have JAK2 ET and MPN: Anyone else have these symptoms?
Discussion
I have JAK2 ET and MPN: Anyone else have these symptoms?
Blood Cancers & Disorders | Last Active: Jun 19 5:40am | Replies (63)Comment receiving replies
Good Morning. I have the Jak2 mutation and diagnosed with ET. I have been on Hydroxyuria for 2 1/2 years and a baby aspirin. I take my meds before bed. I feel a burning in my abdomen which wakes me up to urinate. I have a hard time going back to sleep because I feel hot, like I am cooking on the inside. Does anyone experience these symptoms? Best Regards
Replies to "Good Morning. I have the Jak2 mutation and diagnosed with ET. I have been on Hydroxyuria..."
Sorry you having these symptoms. Definitely consult with your hematologist/oncologist about this. If you are just being seen by your general doctor, you need to have a specialist follow your case. I take the HU 4 hours before I go to bed with 16 oz of water and keep water next to my bed. I drink a lot of water throughout the day on HU and non-HU days. I take it 2x week. I also take 1 baby aspirin and iron daily. I drink OJ with iron and eat blueberries, strawberries, and orange Halos daily. Perhaps, they might consider cutting back on your HU and building up? My doctor initially wanted me to start at 3x a week. I opted for 1x week for a month, then the second month I went to 2x week. I've been at twice a week for 10 months and my numbers are stable. There are also other options for treatment that may be a better match for you. Sending positive thoughts your way!
Karla
Connect
Suggest you tell your Heme doc and your pharmacist. The latter may have helpful info to share w/your doc.