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My son is 3 1/2 and has been on hydroxurea for maybe a year or so. I do feel like his most recent crisis was less severe as it was manageable from home for the first time. We had many concerns as well. For young children they give a very low dose and work their way up while monitoring how they do and their hemoglobin and whatnot(mom is the medical expert). I recommend giving it a try as we switched doctors due to relocating recently and no matter where we are hydroxurea seems to be the gold standard at the moment.
Hi Tito Oye,
yes I’m still on it. I also take Oxbryta and the combination is really help me.
thanks,
Ada
Hi,
Based in the UK I started Hydroxyurea when I was 19 years old and it changed my life for the better, a wonder drug indeed. I went from transfusions once a month and a crisis 6 to 7 times per year to nothing but Hydroxyurea. No side effects. Started doing all the things I couldn’t before, weights, swimming, business secondments, all because of Hydroxyurea. 25 years later and I’m on the exact same dose as day one, 500mg and 1000mg alternating.
The ONLY bad side of Hydroxyurea in my case, not sure about others, is that it makes me infertile while I’m using it so family planning has been an absolute nightmare resulting in us only having one child (a blessing in itself). This was never disclosed until we mentioned having problems. Having stopped Hydroxy, 3 weeks later I was in hospital with a crisis but 4 months later my Wife was pregnant. This is the only but significant side effect of an otherwise brilliant drug.
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