Side effects of hydroxyurea

I am on Hydroxuria since Nov. 2022. Taking 1000 mg per day, unfortunately
500 mg did not lower my platelets. I am 71 years old, female. Diagnosed with
ET. Other than being a little fatigued sometimes, I am doing well.
A couple of times I had tooth / gum pain. Does anybody also experience
this? Thank you.

ETJAK2, taking 500mg daily for three years, am 69 yeas old.

Sometimes I wonder whether these alleged symptoms of mine, (tired, sleepless nights, etc.) are the ET, UR, or simply old age taking a toll. I too am moderately active, I walk my dog twice per day and use my treadmill every day for 20 minutes. I swim when I can, and work in my garden. But I ask my self, did I really expect to have the same energy level I had a 50 or 60?? Prob not.

Recently my hair stated shedding suddenly, and I blamed the HU and started takin the UR every-other-day, and wa-laa, hair stopped shedding. (Platelets creeping up) Coincidence?? Correlation does not prove causation.

So, I say, I will just keep putting one foot in front of another, do the best I can to stay grateful and positive and hope for the best.

@jodyjazz
Can I ask you what UR is? I have been shedding hair recently.
I was diagnosed in 2022 and have been taking HU 500 mg at different intervals…first every day, then every other day, and finally four days a week. My platelets are staying right around 500 and my hematologist is okay with it,
Best wishes, Eileen

@eileen11108
Eileen--- UR typo meant HU...........:-). Sorry
I think my hematologist is rather aggressive. I started on HU 1/1/23 and at that time mine were 576, but now with e-o-day dosing of 500 mg creeped up from 415 to 441, well shall see what May shows. Best to you..................Jody

I started Hydrea April 1 this year. I take 500 mg in the morning and another 500 mg in the evening. Every once in a while I feel totally exhausted. I get small sores in my mouth, but those come and go. Now the skin under my fingernails is turning blue. I read that is a side effect. My platelets are falling nicely, so I hope I can reduce the medication. I have posted here before and received support and advice which is so encouraging! Since I just started on my journey with ET, I will keep posting my experience in case it helps others or I need that hug!

@eileen11108

Eileen,
Your case sounds similar to mine. I was diagnosed in 2023, ET/Jak2, and take HU 500, 4x week. I also need daily iron. My platelets were at 800K, but now in the 500s, and my doc is okay with that since the rest of the blood work looks good again. I have a new glitch. My recent bone density test showed a big change since being on HU for 3 years--and 4x a week is a low dose. I can't take oral bone meds, and now they are considering Prolia. I'm not happy reading about the side effects related to additional bone issues that can be caused by Prolia. Have you been checked for your bone density? I have been in osteopenia for 30 years, but it was stable with exercise, weights, calcium supplements, and diet. It jumped in the last 3 years, and now I have a 35% chance of a major fracture in the next couple of years. At 72, I feel fine, walk, take calcium and enjoy family, friends, and hobbies. Treatments lead to more issues. It's a bit frustrating.
Karla
ET/Jak 2

@mdterp76
Hi Karla,
I have never had a bone density issue. My last one said to repeat in 10 years. I grew up drinking lots of milk, cheese, ice cream, and did a lot of walking,
So I am 82 now, have balance issues, AFib, stage 3A kidney and ET JAK2. Getting old requires courage.
I live in a senior complex and it seems many women are on Prolia, I do not know much about it.
When I have my next Medicare Annual visit I will ask my primary about it.
Best wishes, Eileen

@ina2022 My hematologist told me I had a high platelets count (675) in Nov 2024 with Jak2 mutation. Said I was at risk for blood clots and said he could put me on a cancer pill or I coukd take a baby aspirin. No further explanation. Of ciurse since I was not told I gad cancer I chise the baby aspirin. He said come back in a year. In the meantime I had been seeing a vascukar surgeon for a year for severe pain in my toes. Unfortunately my toes turned black and were amputated with gangrene. I am still struggling with what could or should have been done. Now I am on hydroxyurea 500 mg a day and a baby aspirin and gave a bew hematologist. Very important to see a doctor who takes time to stress dangers of Jak2 with ET.

@princess86

I am so sorry for what you've been through, princess86.

But thank you for sharing your story. Let's all read that again:

"Very important to see a doctor who takes time to stress dangers of Jak2 with ET."

@mdterp76

Not fair! You've been taking good care of your bones.

I have thinning bones too, still in the osteopenia stage.

At my upcoming check-ups with my PCP and my oncologist, I will ask what's the best strategy for someone with both ET & osteoporosis. Will share what I hear.

If we all do this, we'll be better prepared when it's time to speak with our own doctors.