Hydroxyurea: what side effects were so bad you had to stop taking it?

I would also like to know how Besremi is working both in side effects and bringing down the Jak2.

I got sores in my mouth so bad I could hardly swallow

@mcsulli Hello, I am doing pretty well on Besremi. I started out at 100 mcg injection. I had mild headache for the first two days and felt a little tired. On July 1, my dose gets bumped up to 150 mcg. I hope side effects will be minimal. I like Besremi for PV because it targets the root cause of overproduction of red blood cells in the bone marrow, and also helps shrink the spleen, which mine is enlarged. Time will pass and I will know if Besremi is effective for me. Deciding on taking these drugs is a highly personal decision. Ask as many questions as possible and do your research to obtain knowledge about these drugs. Each drug can produce different side effects for different people. I hope you find a drug that improves your PV and improves your quality of life!

Hi colran,
I am a 74 yo YOUNG woman. I was diagnosed with ET, CALR+, JAK2- in April, 2024 but did not want to take any meds. I finally agreed to try HU from May-Nov., 2025. My platelet count went from 664 down to 224 so the drug did work. However, I had to stop taking it because I lost 2 teeth, lost so much hair, and had constant joint aches. My count went up to 774 but I have since been taking supplements prescribed to me by my acupuncturist and functional medicine therapist. My last 2 blood draws were 700 and 646 so I am hopeful the count will continue to go down. Unfortunately, my medication was covered by my Medicare insurance, but my supplements are not. It is a lot of out of pocket expense, but I now have 2 new dental implants, my hair is growing back slowly, and I no longer have the joint pain. Every person in this group has a different response to HU. For me, I have no other health issues, yet my quality of life was hindered. I continue to work out 5-7 days/week at spin, strength training, and yoga, eat an anti-inflammatory diet, and lead a happy, active life enjoying my grandchildren, traveling, and cheering on our son as he coaches Utah Valley Wrestling (I'm the #1 Cheerleader and Fan!). I hope you find a solution that is better for your health. I send you my LOVE!

@lehall125 Thank you for your post. My name is Gabriel (diagnosed with PV/ Jak2 a little over a year ago; currently taking aspirin only). I so appreciate hearing that I am not the only one who is willing to let my platelets fluctuate btwn 600-800. I suppose I have been lucky in not suffering any symptoms, except for some erythromelalgia (redness, blisters, burning in the toes) which has now mostly disappeared.
Like you, I lead a rather active life physically with daily yoga & meditation for the past 50 some years, to which I recently added the gym. Though somewhat hampered by pesky memory issues, I continue seeing clients as a therapist and wouldn't want to add to the natural brainfog of age by risking HU "brainmush". Also, at 76, I continue to enjoy riding my 1700cc motorcycle -- Luckily I have slowed down with the years, but still thoroughly love rumbling and dancing with the curves. Now, am I recommending that everyone reading this get rid of their HU and buy a motorbike? Not in the least. The choice to take or not to take chemo drugs is ultimately an extremely personal one. Remember, this is a "support group"; may all participants in this group (please) support even those who make a different choice.

@gajokos Support is great, and declining treatment that doesn't work for you is fine by me. I do, however, think that people sometimes blame unrelated ills on HU, that rationale for alternative treatments should be sourced with something more than "I read somewhere that ..." and that outright misinfo needs to be corrected.

Did you do anything for erythromelalgia? I had this before taking HU, but it still comes back occasionally. Oncology said, yup, that happens, just gotta deal with it. Cool water or compresses about the only thing I've found that works.

Not a motorbike aficionado, but I did some freelance work for Harley-Davidson many years ago. Absolutely nicest, most collaborative clients I ever had. Seemed like a great company. A local Harley Owners Group here does fund-raisers for vets and sick kids. I enjoy chatting with them about their bikes--and then beat it when they crank up the music.

Hi colran. My name is Linda and I am on the chat group. I’m very curious as to what supplements you’re on and who your homeopathic doctor is? I know you live in Utah. I live in Tennessee but very curious as I also am thinking about going off HU as I’ve been on it now for almost 2 years and I hate it and I’m having the same side effects that you are so if you can send me the information that would be awesome. Have a beautiful day and congratulations. I’m feeling great. I think you’re awesome.

@lehall125
Hi wrestling mama. Great to read posts from other active wonen my age. I was diagnosed April this year with ET JAK2 with platelets around 920. Extreme afternoon fatigue has been my issue. Started HU and baby aspirin everyday. Side effects caused me to lower dose to every other day. I’ve gradually upped dose to 5 days a week. I struggle with balance issues and some Gerd since being put on both supplements. Take aspirin with food. At the beginning I had added pure cranberry juice as it can lower platelets. Little did I know it is high in salicylic acid which is what aspirin has in it. Really messed with my stomach so discontinued the juice.
I see an acupuncturist NP internal medicine doc as well. I’m curious what supplement regime you are on as my hair is really thinning and all over body aches have really gotten worse. I still exercise daily and try to play a little tennis a few days a week with friends that take it easy on me.
Thanks for your input in sharing ideas.

It’s good to read that for those who suffered side effects from
hydroxyurea, there are effective alternatives I’ve been taking
500 mg every day since 2018
with no side effects and it keeps all my numbers stable. Guess I’ve been lucky. Have had
skin cancers requiring MOHS
but have since begun more frequent skin checks with derm and been vigilant about daily spf
Product application No other issues🙏🏻. Good luck to all
PS. I am 80 and was diagnosed with PV when I had a stroke

@nohrt4me so true!! Our treatments are no picnic, but the disease also had serious symptoms and poses health risks which can be mitigated with cytoreduction, yet folks often to blame HU for symptoms the disease is most likely causing. I have been on HU for about a year or so, my platelets are down and I feel better. It helped me right away to a degree, but it took months to significantly reduce my platelets which has a profound effect on how I feel. Interferons can take even longer, so you have to be patient with the treatments.