Anyone else find the side effects of Hydrea 500MG frightening?

Sure @nohrt4me, but the study specifically mentions the affects of inhibiting/reducing platelet aggregation in humans. The way I see it, in my situation (platelet counts of a million or so), my best options are to slow down platelet production and/or make them less sticky. And fortunately, I happen to like mushrooms!

Thanks for posting. Very informative and I am currently eating many of the fruits and vegetables in this study. I notice when I am eating healthy my body and mind reflect the wellness.
We are what we eat, especially with the correlation studies supporting evidence surrounding ET and high cholesterol.
I am exploring all of my options to minimize this mysterious/uncurable disease, including a full commitment to different forms of exercise on a daily basis.

This is in response to @eddb I have been taking this medication since 2014. I have had no side effects. Please take the meds but continue to a find a good hemotologist/ oncologist. They put me on a daily baby asprin daily. This is to help with the potential clots. I don't know if you will have any side effects or not but you need to try it so you know. There are other drugs they can use as well. Good luck...

The world is full of people who think they have outsmarted cancer. Folks might want to read about Jessie "Boss Lee" Ward. She was sure everybody on chemo was a dupe, too.

@nohrt4me - I really don’t think this is a discussion about “outsmarting cancer” - at least, that’s not the way I’ve ever thought about it. To me, it’s all about keeping an open mind and finding the best possible approach to help our bodies heal and become healthier. We’re all different and we need to choose the path that’s best for us as individuals. I’ve had many family members and work colleagues go through chemo treatment over the years, none of which I would ever consider to be “dupes”. They just chose the path that they felt was right for themselves at that time. For myself, I choose a more wholistic approach to my health and tend to shy away from pharmaceuticals as much as possible. But that’s just the path that I’ve chosen for myself. I wish you the very best with your chosen path.

Who is Jessie Boss Lee. ward?

I don't wish anybody ill here, but I have had ET for many years, and I ran a FB group and blog for several years when you couldn't find support or info on ET. I had 6,000 patients from every continent except Antarctica on the FB page at its peak, and I learned these lessons. Please excuse the length of the post.

1. Supplement sellers often pose as patients on support sites and claim that whatever they're selling will control platelets. First it was resveratrol, then turmeric, then CBD oil, now apparently 'shrooms. Mostly the claims say how GREAT they feel and they offer some very tenuous studies to support their claims. God knows, I wish dark chocolate bonbons and smoking dope would cure or control ET. But they don't.

2. Cancer patients are sitting ducks for other people's conspiracy theories about traditional medicine. Many do not confide in friends and relatives because they don't need to hear that when they're hit with a cancer diagnosis.

3. There are many people who use the "everyone is different" mantra to justify making scientifically unsound medical decisions and, by example, encouraging others to freelance. Sorry, but ET pretty much works the same way in all patients. Some patients do better on Peg than HU, some patients will be more likely to have bone pain or strokes. But it's not like we're so different that I need chemo, but you just need a glass of red wine every night.

4. Many patients obsess over platelet counts without understanding that ET isn't just about platelets, but about a genetic mutation that affects blood production in the bone marrow and causes fibrosis in the bones themselves. ET also seems to have system-wide effects by triggering histamine/inflammatory responses, which are still poorly understood.

5. Doctors do a terrible job explaining ET and what the treatment will do. They also vary a lot in how well They keep up with the latest research. They gripe about patients googling things, but can only spare you 10 minutes once or twice a year to talk to you. It's how American for-profit care works. Their treatments do work. Holistic practitioners tend to spend a LOT of time with people and offering loads of empathy and treatments supposedly tailored to their specific bodily needs. Their treatments do not work.

I don't really have anything else to add here, so I'll get off my soap box. I hope it's food for thought. I hope people trying alternative treatments are consulting with doctors and being monitored.

Yes, sick stomach from Hydrea, massive hair loss after 2 years of taking the stuff, initially on alternate days, then due to nausea & total lack of energy from them, I informed my Haematologist re this. He reduced them to 3 tabs per week + venesection if Hct was elevated over 45. My Hct has been within the normal range or just borderline, so no venesection since January last. He did give me the option of venesection only, or a combination of it & hydrea or to try a new tablet. I think I should have gone with venesection only.
My platelets & Hct were within normal range last appointment 2 weeks ago.
Was off hydrea back last March, developed sick stomach from med I was prescribed for a badly bruised muscle on my side. Had to sleep in a sitting position, due to pain. I was able to stomach the Warfarin tabs as are very tiny. Reason why I am on warfarin is prior to my PV diagnosis, approx 9 mths, I developed clot in my leg. Was put on warfarin for 6 mths. Had another review after that, was taken off warfarin, approx 4 months later developed lung clot, blood test sent for PV check, result..PV diagnosed with a Jak2 mutation.

While I took myself off Hydrea for approx 2 months! I felt I wasn't exactly reckless by doing so when I was already on warfarin blood thinners.

I had just gone back on Hydrea for about 3 days when my Haematology appointment was due. Lo & behold my Hct & Platelets were well within the normal range, Dr (not the Consultant) decided I didn't need any prescription for Hydrea, let me off home without a fresh prescription told me no need to take them. How relieved I was! She arranged a further appointment for 4 weeks later, attended that, readings still within the normal range, so again, no prescription needed.! Next appointment was 4 weeks later, platelets had crept up a bit so back on the Hydrea × 3 per week.
I must mention that my hair ceased to fall out was beginning to grow back reasonably well when I was off the Hydrea for almost 3 months!!
I did ask Haematologist if any need to be on Warfarin & Hydrea concurrently, to keep my blood from clotting.
He hesitated, didn't give me a conclusive answer!!

Apologies if I have confused any of you by by the way I have printed this but, had already printed it it but text flew off the screen.
Mags 17

I was put on Hu every day when forst started until I developed anemia. Dr stopped all drugs put me on iron and now only take hu 3x a week with no side effects.

@eddb, I had the SAME, EXACT REACTION to the list of side effects. I'm 71, diagnosed with Jake2, prescribed one 500mg/day Hydrea. I filled the script, took a pill, THEN I read up on the drug (typical, right?). It freaked me out so badly -- I said no way Jose am I taking these pills!! I called the Dr office wanting to talk to the Dr, only to learn I did not see a Doctor--but a Nurse Practitioner! So I threw a fit and wanted to talk to a "DOCTOR!!" (Hematology/Oncology). Finally got an appointment 4 weeks out. Finally got in to see doctor and told him I live in Hawaii for a reason -- I worship the sun. The side effects warn of being in the sun. No way can I stay out of the sun! He spent 90 minutes with me and my partner explaining my condition, alternative treatments, processes, possible outcomes, etc. I was very lucky to find an awesome doctor to spend that kind of time with me. He explained they (the drug manufacturers) have to share ALL side effects (no matter the dosage) and he felt that staying out of the sun on such a low dose would not be a problem -- but no baby oil or mirrors!! (He has a nice sense of humor 🙂 So he put me on 1 pill every other day. I did that for a month and numbers came down (from like 800 to 700), then next reading in 4 weeks numbers went up to 900--so he upped the script to 1 pill per day. I am currently waiting 6 weeks for the next reading (and I'm about 3 weeks away from that reading). Side effects so far are Hot Flashes (thought I was done with that--but nope!) And sometimes my shins feel like they are sunburned--but only for a few minutes then it goes away. And sometimes my legs get the sensation of goose bumps or chicken skin--but no bumps, just tingling sort of feeling -- which is short lived as well. I have read from and about a lot of people who have lived regular lives for lots of years taking Hydrea and it seems to be a common solution to reducing and controlling high platelet count. And I'm feeling much better after being involved with this Mayo Clinic support group -- with what I'm learning every day from the participants. I really appreciate what Mayo has done by providing this forum. I hope this helps you feel a little better about what your doctor has prescribed for you. And I wish us both a long natural life ahead! With Aloha, Jan Davis