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Anyone else find the side effects of Hydrea 500MG frightening?
Blood Cancers & Disorders | Last Active: 1 hour ago | Replies (194)Comment receiving replies
I have been on Hydro for almost 10 months. All of my bloodwork is within range but I experience extreme fatigue, brain fog and shortness of
breath as well as short term memory loss. My legs feel so heavy. I don’t know if it’s the HU or the PV (I am also JAK2 positive), but my life is greatly reduced. They put me on Jakafi briefly but my liver became inflamed so I went back to HU. No phlebotomies for nine months now and no need. Each individual has their own experience but mine is positive for the HU and a big NO. For Jakafi.
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@sistersandy815
I have same type symptoms and/or side effects. PV diagnosed June 2025 and taking aspirin for years but added HU 500mg daily after diagnosis. But I don't feel positive about HU since it has greatly impacted my life negatively. Like you, my blood counts are great but that sure doesn't make me feel better. Have you asked about reducing HU doses? I told hematolagist that I needed to have 2 days off per week because of driving to doctor appointments. He wasn't happy but agreed to take HU 3 days in a row and off 1 day and continue that sequence. My last 2 monthly blood labs after this change have been fine and my 3rd one is next week. If blood labs are still normal range, I will ask for another day off. If they start to increase over normal range, I will add back 1 weekly dose. How do you feel so positive when daily life is so hard to tolerate? I can't meet friends for lunch, can't take a vacation, can't shop without holding on to a cart, can't help with grandchildren , can't have family dinners or entertain. I have to see dermatologist every 3 months because of basil skin cancer and melanoma, both ok after surgeries.
I'm glad you can still feel positive and I'm trying to get there also.