New to Hydrea for ET

Hello, When I was first put on Hydroxyurea 7X a week I had some hair loss and hair thinning. It wasn’t in “clumps” but I could see my scalp and it was obvious. After about seven months we got the dosage down to 3X a week and I slowly saw that going away. I’m taking it for two years now and my body has adjusted and it is no longer happening. Be aware
That it may cause very sensitive gums and tooth pain in the beginning also. Good news is that dissipates. Good luck and have fun in the sun. No direct Sun with being on this Medicine and that has really sucked!

I'm 70 and very active. I was diagnosed with ET in November, 2023 and have been on HU ever since, starting at 500 mg 2x a day, every day. As my platelet count came down, my dose was reduced to 2x a day, 4 days a week. I have had some hair loss - more at the beginning and it slowed down as the dose was reduced. I can now see a lot of new growth right around my hairline. The hair loss wasn't so bad that you could see my scalp, but I could tell by feeling it that I had less hair. In the grand scheme of things, I'll take hair loss over an early death from a blood clot - although I understand the vanity aspect, too. Not everyone has this side effect, or any others - we all react differently to medications and I'm hoping that you will experience very few or none at all.

That’s why I’m here now before I start the medication but really, never direct sun? That will be tough as I’m always outside. Thank you!

Thank you so much!

Hello, mfeley! Staying active is great! And every low-dose aspirin helps protect against blood clots and strokes.

Diagnosed with ET (MPL driver) in October 2023, I take 10 500mg capsules of HU (hydrea or hydroxyurea) a week. Happily, I haven't had any hair loss.

To second the important point nypara66 has made: HU makes us more vulnerable to skin cancers. It also lowers our immune response. So -- take precautions, stay strong!

Thanks for your reply. I was a redhead so already having many things zapped off but I still love the sun and wear sunscreen and a big hat.

I’ve been on HU after being diagnosed with ET as a result of JAK-2 mutation shortly after my 87th birthday. It’s been almost a year and my platelets are dead normal after a dosage of 500mg per day for about 3 months. I’m now only taking HU 4 times a week. I’ve not exhibited any side effects except for a possible increase in Squamous Cell activity. Not sure if it’s related to the HU, as I’ve had issues with skin cancers in the past. Just my days in the sun catching up with me. I was a beach bum in my past life. Having the right Hemo/Onc is a blessing. I’ve got one here in South Florida. Extremely conservative approach to my ET problem, easy to speak with, and compassionate. Live your life to the fullest and don’t worry about your hair. It a small price to pay for a productive life.

Yes I am two years in with PV and am 58 so slathering on sunscreen and wearing a hat has been life changing. You can feel your skin burning and stinging otherwise. I miss my tan.

Hi, 70 and also CALR. Been in HU x 6 years (500 mg per day plus extra 500 mg M/W/F). Your hair may thin slightly. It will not fall out in handfuls like with infused chemo.

Biggest bugbear for me is dry skin and extreme fragrance sensitivity, tho jury is out on whether that's because of ET or HU. I use fragrance-free, hypoallergenic shampoo, conditioner, moisturizer, etc for sensitive skin. Vanicream and Aveeno have good skin care products that are affordably priced.

I garden. Wear sunscreen and a hat. I go to the beach and use one of those pop-up sun shelters I had when my son was a baby (30 years ago!). But I live in Michigan, where we are not exactly sun-worshippers ...

HU may cause gastric upsets or constipation. Hematologist suggested probiotics, and that helped.

Try to get good sleep and daily exercise. Those two things will keep you looking good!

Hydrea is an oral chemotherapy medicine that is not likely to cause hair loss with the dosages needed to treat ET. You will want to take your meds with food and a full glass of water, wash your hands after handling the meds and up your normal intake of water throughout the day to help fush the toxins through your body. Most of us here on the site only have slight reactions to the meds. Mouth sores (drinking lots of water keeps this from happening) and slight headaches occasionally are the only ones I've had. As long as I stay well hydrated I don't have any side effects.
I'm 67, have ET JAK2, and have been taking hydrea for four years now.
My medical people tell me I'm more likely to have hair loss due to stress or aging, than from the hydrea.
Please rest easy and enjoy your trip.