Experiences with

Hydroxyurea

My husband has been taking hydroxyurea for ET for 2 weeks now with no ill effects.

Has anyone experienced disproportionate weight gain after taking hydroxyurea for essential thrombocythemia?

Other metrics have clearly responded to the hydroxyurea (RDW, RBC, immature granulocytes, etc), others to the phlebotomies (MCH, etc) I have a phone appointment with the hematology pharmacist in a couple days to help talk over what may need adjusting re the hydroxyurea in the early stages (current 1

I am still on 500 mg Hydroxyurea, the minimal dose once a day! I saw an ENT yesterday. The doctor who never heard of my ET, didn't see any info about Hydroxyurea as a possible reason. Has anyone else dealt with Pulsative Tinnitis? I did find this today and more info as well.

I read it is not recommended for those on photosensitive medications which Hydroxyurea is. Any thoughts out there? Thank you, mbr8076

Does CoQ10 or NAD+ interfere with Hydroxyurea and aspirin? Love this group.

I have been advised to take hydroxyurea and aspirin.

My 76 yr.old husband has been diagnosed with this and soon will have to start treatment with Hydroxyurea. He had no symptoms and the diagnosis was found after random blood tests.

I am taking hydroxyurea for my pv. From what I have read since I joined the group, there doesn't seem to be a way of confirming early the onset of myelofibrosis other than having regular bone marrow biopsies, which would be extremely expensive.

I know Hydroxyurea is supposed to increase our risk of skin cancers. Does anyone know if having 2 in 6 months means I need to switch meds? I’ll ask my MPN doctor soon but just wanted to find out what you folks may have been told. Thanks. Katie

- Started Hydroxyurea Sept 2022; made the typical adjustments until May 2024 - Started Besremi May 2024 and titrating down the Hydroxyurea.

I am concerned about the medications that are offered and if they are ok to take having PV and being on Hydroxyurea. I appreciate hearing your experiences.

I have been on hydroxyurea for ET for over six years. My dose is low - 500 mgs three times a week. Up until now I have had zero side effects and my platelet count is in the normal range, so it is doing its job.

Ever since I was switched from Hydroxyurea to Pegasys, my body has had an explosion of pain, ranging from headaches to GERD to sinus issues and beyond. Trying to figure out if it's the combination of the thyroid disorder and the interferon, or I'm just getting older and falling apart.

Met with hematologist today here in Houston and I am pleased to report that it was a fairly good one. 41 yo male CALR mutation - on Pegasys 135 mcg weekly and currently weening off of hydroxyurea @ 500 mg (1 pill) every other day.

Hi I take 1000mg hydroxyurea and 1 clopidogrel daily for the last 20 years since I was 39. I feel I need a boost and wanted to take iron, b12, and vit d anybody know if there would be issues with this. struggling with headaches and fatigue at the moment

Used aspirin, regular phlebotomies and in the last 2 years Hydroxyurea ( 500mg>1000mg) as the HCT levels kept creeping up to mid 50's.

My haematologist suggested that I go onto chemo tablets last year because of being over 60. I was reluctant because of side effects and so we compromised on Clopidogrel to reduce platelets. Has anyone else had the same experience? I wondered if age should be a factor for these strong medications or

I have ET and started Hydroxyurea 500mg. So a low dose. Started on 10/28. I believe I’m tolerating. I have bloodwork 12/11 to see what my numbers look like. I’m 56 and the exhaustion is unbelievable. I was always the energizer bunny and now I’m barely a turtle. How do you deal with it?

So I will probably have to apply for Medicare Part D.I asked the salesperson to lookup Besremi because my hematologist said I could switch from hydroxyurea. She said it is in her Medicare Advantage plan's formulary and would fall under the $2,000 maximum out of pocket if it is "authorized".