New to Hydrea for ET

Does HU affect osteoporisis? Please tell me.

Hi,@lehall125
Are you taking Vitamin D3? It is favourable to the health of teeth.

@lindakay55

Searching this topic, I came across a study looking at bone density in sickle cell disorder patients. (A.K. Tripathi, Nature, December 2024). A conclusion was that HU may contribute to bone loss.

It is essential to note: Someone with sickle cell disorder may take as much as 2,000 mg of HU every day.

That is a much higher dose than we take for ET or other MPNs.

And of course those afflicted with SCD may begin to take HU as children, something rarely if ever true for MPNs.

Also -- this was a study using not people, not even laboratory mice, but instead a digital animal model.

I am not a digital animal, so this isn't going to keep me up at night.

As a Physician's Assistant told me recently, it's always a good idea for older people like me to
- stay active and build my muscle/bone strength and
- have bone density scans every few years to monitor bone density.

A friend walks with light weight bands around her ankles . . . I now lift light dumbbells during my treadmill "walks."

Find an activity that you love and be your best self!

I have read many times that this affects everyone different. I have had a few side effects but they seem to come and go. I am 72 have been taking Hydra since May of 2025. Very little hair loss really I think I just watch for it more but probably no more than normal. Dry skin, bone pain nothing that Tylenol can't manage and sometimes really tired not every day just random. Now for the hair the women in my family are slow for gray hair my mother at 95 still has about half of the gunmetal gray hair. I have noticed several colors of hair blonde, brown(my natural color) red, white and gray. Which is ok with me. I take Biotin daily 10,000 units my Doctor said that what you don't need in the B vitamins you will urinate out. Ask your Doctor my Doctor also has me on iron and B12 along with m hydra 500mg 7 days. Last platlet check was 290.
Good Luck

@janemc Thanks. I already have osteoporsis so need to check this out.

I didn't lose any hair (other than normal thinning with old age). I had some gut problems for the first year. I've been on HU for 5 years now and platelets are under control. I was more afraid of stroke or heart attack from blood clots formed by platelets. I also take baby aspirin to make platelets less sticky.....but it is a chronic cancer. and there is a research paper on Google Scholar which connects ET with Jak2 mutation to endometrial cancer, don't know about Cal r mutation. I do have bone pain in toes and shins, but Dr says not from ET, but tylenol does nothing for me.....and I'm supposed to avoid NSAIDS, but now Dr said I can take
ibuprophen occasionally, So maybe if pain really bad (not just bone pain but other old age pain) I take maybe once or twice a month, I was tested and do take Vitamin D and B12. With HU you'll need to avoid sun, use sunblock.....

Hi,
I'm 79 yr old female, on HU (500 mg daily) for a couple of years for ET JAK2. Just recently, my normally very thick hair started to thin significantly. So I suggested to my provider, that we try every other day, and will check blook in six weeks. But hair is still thinning, despite lessening the dose, blook work in March. That's my story.

Unfortunately, if I were to continue to take pharmaceuticals, my insurance would cover the cost. But since I have decided to try alternative treatment and supplements for ET, all costs for treatment are paid for out of pocket. My acupuncturist has me on Evergreen Circulation (SJ) 2 caps 3X/day. My Functional Medicine therapist has me on Neo 40 (Heart and Circulation Formula) 3X/day, Hemo Guard Supreme 3X/day, Nattokinase plus, Lumbrokinase, Annatto-E /synergy, Thytrophin PMG, Vitamin K2 and 81 mg aspirin 2X/day. I also take Dr. Livingood Vitamin D+ Immune Complex, Omegas + Turmeric, Cholesterol Support, Hair, Skin and Nail Support, and Joint Support. I choose to spend the money on these supplements with the hope they will manage my high platelets without the detrimental side effects I had with HU (loss of hair and teeth, joint aches). I will continue to have periodic blood draws to monitor my numbers, but will not return to taking HU.

@ebertolis Yes, I do take Vitamin D3 and K2.

@lehall125
Wow, you could have a doctorate in herbals meds. Good luck and please keep us (me ) posted on your progress.