JAK2 Mutation - Effects and Questions

I was diagnosed with ET with Jak2 by accident 2005. My 1st. Hematologist started me on 500mg. Hydoxyurea 3x daily I was weak nausea and chills just laying around unable Togo to work. I saw the Dr. And told her how I couldn’t tolerate med. she stated have to take this dosage and adjust. Well I never returned to her and found a new hematologist who immediately placed me on 500mg. 1x daily. It worked fine and I have taken it since 2005 and it lowered the platelets enough without an increase in dosage. For some reason since I retired from the dental field in 2020 due to back problems, my platelets dropped enough to discontinue the hydroxyurea. To not take it with high counts can risk stroke heart attack due to possible blood clots.

I have been on low dose Hydroxy for 2 months now - do notice small mouth sores. Otherwise, just fatigue that is mostly manageable. I have JAK2 mutation with Polycythemia Vera... also have had Chronic Lymphocytic Leukaemia for about 15 years ( with little treatment) and was put on Xarelto and ASA low dose for peripheral artery disease. I am 80 years old, and try to keep active with yoga and core classes as well as a good walk once a day. One Phlobotomy, and platelet count has gone down to 400 range from over 600.

Hydration is very helpful in preventing the mouth sores...take a full tall glass iof water with your hydrea and at least five more full glasses of water during the day...this helps your body take in the med to do it's work and then to flush it out so that it doesn't build up in your system. It's the buildup in your system that causes the mouth sores.

https://www.nccn.org/patientresources/patient-resources/guidelines-for-patients/guidelines-for-patients-details?patientGuidelineId=27
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I have ET Jak2 and I understand that we all react differently to medications....I have seen it mentioned that hydroxyurea has caused other people to develop sores in their mouth among other "problems". They are always small and only last a couple of days, and I am guessing it is from the pill touching my tongue. I have seen several mentions about handling this pill and washing your hands immediately after. For me, the sores in my mouth from taking this medication 4 times a week, is minimal and this is my only problem.....my platelet count has been within the normal range for the past six months, and for that I am grateful and willing to put up with these small areas on my tongue. Does anyone else have this side effect as an ongoing situation?

My understanding is this is something you will always have to take. Please follow up with you MD though. I have been on it for 3 years with a low dose of ASA. Best to you.

My age is 32 and I have ET with jak2. For how long I can take hydroxyurea??

What's the difference between polycythemia vera and just polycethemia? A lung specialist told me that "they had not yet found the cause of mine".

ET is essential thrombocythemia, a variation off MPN Myeloprolifertive Neoplasm PV is a variation of MPN, as ET is. There are 3 variations, for the moment I can't remember the third

Hi Remo,
I also have ET w/Jak2. There are a lot of different opinions on this site. Best to talk w/your heme doc. Mine also said I do not have cancer.