New to Hydrea for ET

@ebertolis Hi, I totally understand your anxiety..The hydrea was causing me pains in my feet..But I'll tell you that just knowing that it is Chemo (small dose however) mentally freaks me out...Try it and maybe it will be different for you..Were you feeling any symptoms? Mine was diagnosed because I had HBP that couldn't be controlled...I'm trying everything not to go on meds but if all is said and done I may try it again with more of an open mind..The beetroot is for my HBP and I also lost 35 lbs..My BP is much better...My platelets last month were 730..I go next week and I'm hoping they have come down..I'm actually on No meds at the moment.. But like I said , I'm sort of a freakazoid about medicine..I will be 70 in 5 months..I'll post again and I sincerely wish you the Best..

Hi,@guitarjane74
Thank you for your answer. I am 72 and my symptoms had been dizziness and heartache and blood analysis revealed this awful disease (TE). I hate illness and since 2008 I did not see a doctor before this January. My BP is not high excepting at the doctors. I'll be equipped by a BP holter for 24 hours in order to see real blood pressure.
I'm taking Hydrea for the third day and if I experience a bad thing I'll stop it.
At early March I'll be examined by a heart scanner. Nice program!
Best regards.

Hi,@maine
Are you still taking HU or did you stop it after this good result?

@ebertolis Yes, still on daily HU in liquid form. I got it compounded for a few years and now on the brand "Xromi". Probably developed for pediatrics but good for those of us who can't swallow pills. A bit tedious as it must be refrigerated but it's working. Blood is tested every three months to be sure all is well.

@ebertolis

Hello, ebertolis! As long as my mis-programmed bone marrow is pumping out excess platelets, I will keep taking HU.

Unfortunately, ET's not like a pulled muscle, where you take an aspirin only when it hurts.

ET's a chronic condition that has no cure.

If you and your doctor decide that HU is beneficial, then please remember: every capsule is protecting you from strokes and clots, reducing the exhaustion and headaches of ET, and shoring up your bone marrow.

Do I LOVE taking pills? Absolutely not!

But am I going to let ET win?

Heck no.

Hello mfeley. I am a 74 year old woman who was diagnosed with ET, CALR + but JAK2- in 2024 but refused taking HU. My husband was so worried I would get blood clots and have a stroke. So I tried taking HU for 6 months in 2025, but lost 2 teeth, terrible hair loss, and had constant joint aches. I lost 25 lbs 9 years ago and have kept it off due to eating an anti-inflammatory diet and working out with spin and strength training classes (I'm the OLDEST in all my classes!!). I have no other conditions and take no other pharmaceuticals. I decided to stop taking the HU and consult with a Functional Medicine therapist and get regular chiropractic and acupuncture treatments. Other than high platelets, my blood work is all normal. I now take 81 mg aspirin 2x a day and supplements to address the high platelets. I am still losing hair, but I know it will take 6 months to get the drug out of my system. But I no longer have the joint and teeth aches and look forward to my thick hair returning. I will have regular blood work to check my platelet count, continue my lifestyle changes and take my supplements, but will NOT return to taking HU because the "minor" side affects are not acceptable. I know many people on this website say they have no side affects, but I hope those who do will speak up to support those of us who did.

@ebertolis I know we’re each different, but I took Hydrea for about 4 years with no problems at all. I hope you do well on it.

I've been taking HU for a year now. My platelets got up to 1200 and fluctuated all year coming down to 307 and back up to 549 last visit. I have taken as much as 1000 mg HU every other day and 500 mg in between. At first I did have hair thinning, a lot. That has stopped and new hair is 3 inches long now, mixed in with my existing hair. That has been hard and I am a little vain, but hair loss affected me. My hair is still okay , a bit dryer but okay. My fingernails went through the same trauma, flakey and layering, but doing much better now. The first few months of HU adjustment period was hard, but I feel like I can manage now. I take 80 mg Aspirin daily. I have been diagnosed with Osteoporosis as well, and tried Fosomax but stopped after 5 doses. The bone and joint pain along with HU was too much. I'm addressing Osteo naturally and feeling like it's best for me. I also don't have a thyroid gland (complete thyroidectomy in 1989) so I am drug dependent on Levothyroxine too and that has always been a rollercoaster for me. I would like to live another 15-20 years; I'm 74 now and feel like that could happen if I take care of myself. I would say, don't be afraid of Hydroxyurea, it could save your life. A stroke would be much worse. Life is still good and getting better each day!

Hi I'm 78 with ET , JAK2 and on Hydra since December2025. So far only slight hair loss.
Enjoy your trip!

@lehall125
What supplements are you taking to lower platelets?
Thanks