New to Hydrea for ET

Posted by mfeley @mfeley, Feb 22 5:24pm

I am a 73 year old very active woman who was recently diagnosed with Essential Thrombocythemia by having a high blood platelet in a CBC and then a bone marrow biopsy that confirmed the diagnosis with a CALr gene. I have no symptoms and am on no medications for anything else except for a yearly infusion of Reclast for the old bones. I run most days of the week and work out at the gym.
My oncologist hematologist says I will start on 500mg of Hydrea when I get back from my monthlong trip to sunny Costa Rica. Right now I’m just taking a baby aspirin. I’m not so afraid of the cancer as I am the treatment. I can overcome a lot of things but one I can’t is the fear of losing my hair. I’m just going to say this is all about vanity. I haven’t read much on this forum about this possible side effect. I’m looking for reassurance that this is a rare occurrence. I hope you can help. Thank you.

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bobala | @bobala | May 17 8:20pm

In reply to @janemc "While some people do have problems with Hydrea (also called HU), many of us do not...." + (show)

Thank you so much for your comments. My hematologist really seems to think that starting me out on low-dose every other day is the best thing. She thinks the benefits outweigh the possible side effects. I’m just really nervous about all that I have read about this medication.

janemc | @janemc | May 18 8:00am

In reply to @bobala "Thank you so much for your comments. My hematologist really seems to think that starting me..." + (show)

ET taxes our bone marrow and makes us vulnerable to blood clots and strokes. To me, using HU to reduce these risks is well worth it.

Experiment and find your best time of day for taking HU. Mornings? Evenings? Just avoid taking a capsule on an empty stomach.

Drinking lots of water is an especially good idea when we're on HU.

Did you know, HU also helps people with sickle cell anemia? It's been in wide use for a long time.

1995victoria | @1995victoria | May 18 9:37am

I've been on HU 1000mg for 4 years.....no hair loss....just some gut issues the first year

1995victoria | @1995victoria | May 18 9:39am

In reply to @bobala "Thank you so much for your comments. My hematologist really seems to think that starting me..." + (show)

Every one reacts uniquely.....I rather limit the risk of stroke or heart attack

nohrt4me | @nohrt4me | May 18 9:46am

Just me being cynical, but often the bad things you read about HU are from alternative medicine sources that want to scare you off chemo and buy THEIR stuff instead.

In the 10 years since my ET was diagnosed, I've seen alternative practitioners hawking resveratrol, turmeric, CDB oil, cinnamon, and ginger. It's like Spice Rack Roulette.

A 2019 study did show curcumin (turmeric) might have some effect on MPNs, but those studies are preliminary, and there are no dosing or safety guidelines for people. In addition, turmeric supplements taken with prescribed blood thinners can cause bleeding.

The searchable NIH site is here. https://www.ncbi.nlm.nih.gov/

Be sure to look at the publication (e.g. Journal of the American Society of Hematologists), age of a study, whether the study has been tested on humans, and whether a potential treatment has been compared for effectiveness against current therapies.

mfeley | @mfeley | May 18 2:50pm

In reply to @bobala "Thank you so much for your comments. My hematologist really seems to think that starting me..." + (show)

I, too, was really nervous to start Hydrea because of the possible listed side effects and the fact that I’ll be taking it the rest of my life. I started taking Hydrea on March 4, 2025. As of this week my platelets are back in the normal range. I’ve been taking 1000 mg 3 days a week and 500 mg 4 days. I was especially worried about hair loss. As of now, I have no side effects from the drug for which I am very thankful. While some of my other blood numbers are off because of the Hydrea, white blood cell count is holding steady in normal range. I value this forum for insights on managing ET and I wish you good luck with your treatment.

nypara66 | @nypara66 | May 19 5:40am

In reply to @nohrt4me "Just me being cynical, but often the bad things you read about HU are from alternative..." + (show)

Hello, I’m on HU for PV for about two and a half years now. Some hair loss, brown spots in my skin and tooth pain but I deal with it because the other meds are way more expensive and have worse side effects. I was taking Tumerac 1000 mg twice a day and my joint pain and body aches subsided substantially. Then, my iron crashed!! I researched and it said that tumerac can STOP most of your body from absorbing iron. I was told it was safe to take with the HU and baby aspirin from my hemo/oncologist. I’m off it now for a
Month and everything hurts again but I make do with some IB and keeping busy. My energy level is slowly increasing. I completely agree the meds work and keep us from having a heart attack and strokes.Just thought I’d share to make others aware.

hariom1961 | @hariom1961 | May 20 4:24pm

In reply to @mfeley "I, too, was really nervous to start Hydrea because of the possible listed side effects and..." + (show)

What were your platelets on March 4

AnnK1221 | @kucharski1221 | May 20 4:51pm

Hello. I have been on Hydrea for almost 19 years. It is a relatively safe drug and I’m sure your doctor will monitor your blood levels while on it. It is the only one I’ve ever been on since finding out about my ET.
It works. I have had no hair loss. My only symptoms may be fatigue…because the chemo targets everything but just our platelets. I found out my Calr gene mutation was also to blame for this diagnosis. It can be tough having a chronic blood disorder but it is treatable. I wish you the best on your journey. 💗