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

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Profile picture for nohrt4me (Jean) @nohrt4me

@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.

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Replies to "@gajokos Support is great, and declining treatment that doesn't work for you is fine by me...."

@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.