Hydro: Does anyone experience side effects with... - MPN Voice

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Sambo1978 profile image
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Does anyone experience side effects with hydro

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Sambo1978 profile image
Sambo1978
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WileyFrench profile image
WileyFrench

I’ve been taking it about a year and can’t say I’ve had any side effects. I drink a lot of water each day which may help prevent mouth sores that some talk about. I alternate two tabs one day, one the other.

Cja1956 profile image
Cja1956

I’ve been taking hydroxy for the past 11 years. It does take some getting used to. When my ET progressed to PV three years ago, my doctor lowered my dosage of about 20 pills a week to 14 pills a week and also added Jakafi. Sometimes, I’m not sure if it’s the sickness or the pills that cause side effects. But drinking a lot of water does help. The medication can always be adjusted if you feel it’s affecting you too much.

hunter5582 profile image
hunter5582

Yes to side effects. It is important to remember that HU is a toxin that alters DNA activity throughout the body. Since it is therapeutically weak, to reach full benefit, the doc may have to keep you on the edge of toxicity. On low doses (500mg/day) I experienced mouth ulcers, thrush (compromised immune response), leukoplakia (discoloration/irritation of surface of tongue), and compromised intestinal endothelium causing constipation and flatulence. There are many other possible side effects: vasculitic ulcers-gangrene (rare but very serious), skin cancer, teratogenic and mutagenic effects. For males, HU can also cause hypogonadism (azoospermia/ogliospermia) and possibly decreased testosterone (lower T is new in the research and not recognized in clinical practice). For sexually active couples, HU passes into sperm/vaginal secretions - so barrier methods are recommended to protect your partner. (Oddly that warning is often not given to patients) Since HU is so teratogenic (birth defects), it is vital to avoid pregnancy while on it and after discontinuing for men 1 year after - for women 6 months after. When even handling the HU bottle, women of child-bearing years (not on HU) are advised to wear gloves. While all of that sounds pretty intimidating, all of the chemotherapies used to treat MPNs have significant risks. Not treating the condition also risks serious complications. Each of us is unique in how our MPN presents and how we react to each of the medications. Some people tolerate the HU really well and clearly benefit from it. Others (me included) are HU intolerant. I have found that some docs do not do a very good job fully informing patients about the medications they prescribe. It is really important to find a doc who will fully explain the risks/benefits of all of the treatment choices and who is willing/able to look at your unique profile and tailor the treatment to match your specific needs. HU is a standard first choice that helps many, but not all people with MPNs. Hope that helps answer your question. All the best to you.

Hahag profile image
Hahag

Sickness sickness sickness