Anyone living with Essential Thrombocythemia with JAK2?

I have the same thing and have been on Besremi injections every other week for the last year. As my blood improved we have been able to taper down the dose and I’m now down to 100mgms. At this low dose I hardly have any side effects. Hope it works well for you.

@sckf
Hello ! Speak WITH YOUR DOCTORS ABOUT A DRUG CALLED JAKAFI !
“JAKAFI “ I took for two years ! I liked . I had PV
THEN MF !

@hanya
I have been put on jakafi for 18 days for AML with mylofibrosis in my bone marrow and enlarged spleen. I have low red cells 8.5 and platelets now at 9. I am afraid the jacksfi Will not work and lower my count even lower. White cells seem to be ok. I have to do transfusions blood and platelets every week. I hope that ends soon.

@jacklyn
I am back ! I want to tell you the rest of my story ! You are correct that JAKAFI CAN BRING YOUR BLOOD NUMBERS DOWN ! Important TO HAVE FREQUENT LABS AND KEEP CLOSE EYE ON THIS ! BECAUSE MY NUMBERS DID GO LOW ! MY NEW SPECIALIST TOOK ME OFF JAKAFI AND PUT ME ON A DRUG CALLED OJJAARA!
It’s newest BUT EXPENSIVE! Speak with YOUR DOCTOR ABOUT OJJAARA ! You may be able to get help to pay for it ! I USED MY INSURANCE! And non profits and I have to pay some portion!!
Good LUCK FRIEND 🙏
I really would like to know how you are doing! Sincerely

Have been on Hydrea for 15 months take 500 mg 3 day a week. Have had random side effects that come and go. Not much hair loss not so to notice until the last month or so. Wondering if this is forever or if if may leave. I took 500mg 7days a week for the first 12 months and reduced to 3 times a week could this just being my body adjusting to the dose ?

@vickieannb57 seek out an MPN specialist. I to was on HU x9 months with too many side effects. My old oncologist never seemed to be “ caring” enough to address my side effects. Found a MPN specialist within 2 hour drive. What a difference. Stopped HU. Will start interferon after my body is reduced of inflammation from HU.

@vickieannb57 I am on a larger dose of HU and have been for 8 yrs. The hair loss did reverse for me. (My hair stylist noticed it, too.) I have some digestive side effects infrequently (constipation and gas, mostly). Some people truly cannot tolerate HU. But for those who can, it's cheap and effective.

@suedeani I started Hydroxyurea in March and after 30 days I had to stop due to the extreme flu like side effects. I asked for Besremi because I have a variety of symptoms. My hematologist wanted me to try anagrelide but after 2 weeks I have increased heart rate and some pounding, my fatigue is far worse, and I have some trouble getting a deep breath while sleeping. May I ask what your side effects are on Besremi? My dr worried that I would have a similar reaction to the HU.

@mdramsey48
The only side effects I have on Besremi are a dry mouth (I drink a lot of water and use Biotene) and it sometimes affects my sleep: either I have trouble falling asleep or wake up and can't go back to sleep. I don't stress because I know it may last a few days but then settles down again. I much prefer coping with that than HU.
Good luck!

@vickieannb57 I take 500mg every three days as well. On it for 6 years no hair loss but has changed my taste and food doesn’t taste as good as it did. Will make me nauseous sometimes so I have anti nausea meds. They all have some side effects. Pick and choose. Good luck.