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Hydroxyurea: what side effects were so bad you had to stop taking it?
Blood Cancers & Disorders | Last Active: 31 minutes ago | Replies (41)Comment receiving replies
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!
Replies to "Hi colran, I am a 74 yo YOUNG woman. I was diagnosed with ET, CALR+, JAK2-..."
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.
@lehall125
Hi, I would love to know what the supplements are that you were prescribed --by the acupuncturist, and by the functional medicine therapist. Would you share here please?
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@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.