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

Posted by colran @colran, Jun 21 10:34pm

Hydroxyurea what side effects were so bad you had to stop taking it? I am about to start week 4 and my brain is pure mush. The hallucinations are nuts! I am trying to stick it out for 6 weeks. Insurance won’t pay for Jakafi . They said after 6 months they would reconsider. Looking for any friends can tell me their side effects.
Thanks very much!

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gigi05 | @gigi05 | Jul 3 8:35am
In reply to @lehall125 "Hi colran, I am a 74 yo YOUNG woman. I was diagnosed with ET, CALR+, JAK2-..." + (show)
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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!

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@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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Wrestling Mama | @lehall125 | Jul 3 9:48am

I am happy to share my supplements with you but they are prescribed by a health provider. My acupuncturist prescribes Circulation SJ. He also gives me Zen Sleep and NO Inducers for aiding sleep. My functional medicine therapist prescribes Nattokinase Plus, Lumbrokinase, Neo40 professional strength Nitic Oxide, Hemo Guard Supreme, Vitamin K2, and Annatto-E Synergy for ET. She also prescribes Thytrophin PMG for my thyroid and Mag Theonate for sleep. But I also take supplements from Dr. Livingood who was my chiropractor in NC. Those are Vitamin D2 +K2, Mutivitamin, Bone Support, Collagen & Joint Support, Brain Support, and Hair, Skin and Nail Support. The sad part is that none of these supplements are covered by my insurance so I must pay for them out of pocket, which is very expensive. My HU was covered and was very inexpensive. But I don't smoke, drink, or gamble, we have no debt, so I choose to spend money to help improve my health. Life is full of choices. I choose a healthy, quality life, and I look and feel GREAT!! Thank you for askng!

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Wrestling Mama | @lehall125 | Jul 4 10:20am

I also take a low dose aspirin 2X/day.i

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ednels | @ednels | Jul 4 10:55am

I was taking 500mg/day for several months and saw my platelets drop from over 800 down to 250 or so. Then one morning I awoke without any muscle control. So mushy I could not sit up. Ambulance to hospital. Tested for many diseases - all negative and ended up with diagnosis of "fever of unknown origin". Continued HU but had a recurrence of muscle loss and was hospitalized a second time. After second hospitalization, discontinued HU and began injections of Besremi about 6 weeks ago. Dr started the dosage low and is increasing the dosage every 2 weeks but platelet count is back over 700. Had bone marrow biopsy recently and results confirmed diagnosis of ET. Going to Hershey cancer center for a second opinion this week.

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garyr443 | @garyr443 | Jul 4 12:34pm
In reply to @scienceteacher "@garyr443 My RBCs have been low well before HU but they have taken a slight downturn...." + (show)
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@garyr443
My RBCs have been low well before HU but they have taken a slight downturn. My Oncologist lowered my HU to 500 mg 3 days a week from 4 but my platelets jumped from 398 to 499 in three week and my RBCs just increased slightly. I want to go back on 4 times a week but they want to wait and see. They don't want me to start iron but I am doing it anyway because I really want to get the RBCs up and the platelets down and I have no real side effects from the HU.
Please keep us informed about the results from the cranberry juice. I would love to get my RBCs up without starting a new medication that might have side effects.

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@scienceteacher As it turned out, the lab was closed for the holiday on Friday (they just have to get a three-day weekend, you know), it will be Monday the 6th when I get my lab results.

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janemc | @janemc | Jul 5 5:41am
In reply to @ednels "I was taking 500mg/day for several months and saw my platelets drop from over 800 down..." + (show)
Profile picture for ednels @ednels

I was taking 500mg/day for several months and saw my platelets drop from over 800 down to 250 or so. Then one morning I awoke without any muscle control. So mushy I could not sit up. Ambulance to hospital. Tested for many diseases - all negative and ended up with diagnosis of "fever of unknown origin". Continued HU but had a recurrence of muscle loss and was hospitalized a second time. After second hospitalization, discontinued HU and began injections of Besremi about 6 weeks ago. Dr started the dosage low and is increasing the dosage every 2 weeks but platelet count is back over 700. Had bone marrow biopsy recently and results confirmed diagnosis of ET. Going to Hershey cancer center for a second opinion this week.

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@ednels

Please let us know how that visit goes!

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garyr443 | @garyr443 | Jul 6 1:26pm
In reply to @scienceteacher "@garyr443 My RBCs have been low well before HU but they have taken a slight downturn...." + (show)
Profile picture for scienceteacher @scienceteacher

@garyr443
My RBCs have been low well before HU but they have taken a slight downturn. My Oncologist lowered my HU to 500 mg 3 days a week from 4 but my platelets jumped from 398 to 499 in three week and my RBCs just increased slightly. I want to go back on 4 times a week but they want to wait and see. They don't want me to start iron but I am doing it anyway because I really want to get the RBCs up and the platelets down and I have no real side effects from the HU.
Please keep us informed about the results from the cranberry juice. I would love to get my RBCs up without starting a new medication that might have side effects.

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@scienceteacher Well, what a huge dissapointment the cranberry experiment turned out to be! First, my platelet count rose, instead of staying normal. My red cells did improve, but not nearly as much as hoped for. As for the question "does cranberry juice lower or raise white cell count?", it turns out that it does raise white cell count. So, a total bust! But, I had to do it, just to see if it would work. Now I know. So, tomorrow, it's back to the Hydroxyurea and the Lisinopril.

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ednels | @ednels | Jul 11 7:28pm
In reply to @janemc "@ednels Please let us know how that visit goes!" + (show)
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@ednels

Please let us know how that visit goes!

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@janemc - Turns out my bone marrow is hypercellular (estimated 80% cellularity) with panmyelosis and frequent clustering and various forms of atypical megakayocytes, consistent with myeloproliferative neoplasm. I have a lot of reading to do to understand all the medical terms. Awaiting molecular study for prognosis. Depending on progression, Dr estimates I have somewhere between 1 and 14 years to live. Monitoring is the gameplan at this point.

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janemc | @janemc | Jul 12 9:40am
In reply to @ednels "@janemc - Turns out my bone marrow is hypercellular (estimated 80% cellularity) with panmyelosis and frequent..." + (show)
Profile picture for ednels @ednels

@janemc - Turns out my bone marrow is hypercellular (estimated 80% cellularity) with panmyelosis and frequent clustering and various forms of atypical megakayocytes, consistent with myeloproliferative neoplasm. I have a lot of reading to do to understand all the medical terms. Awaiting molecular study for prognosis. Depending on progression, Dr estimates I have somewhere between 1 and 14 years to live. Monitoring is the gameplan at this point.

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@ednels

I am truly sorry to hear this, ednels. When our bodies turn against us, it's such feeling of grief and betrayal.

It sounds like you have expert and careful doctors on your team. That's good.

Getting results and guidance will seem to take forever. That's hard!

I know I will not be the only Mayo friend praying for you, ednels.

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ednels | @ednels | Jul 12 11:26am

Thanks. This connection is so helpful to me. Many thanks to all who share on this site.

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