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GI issues after 7 months on Hydroxyurea - What’s next?

Posted by chaiyosef @chaiyosef, Feb 11 1:44pm

My 76-year-old mother (ET, JAK2+) has been on Hydroxyurea (500mg, 3x weekly) for 7 months without prior GI issues. Recently, after resuming this dose following a reduction, she developed persistent diarrhea, nausea, and fatigue.

A CT scan showed colonic inflammation, and infection was ruled out. Her hematologist advised stopping HU for a week, and since then, her GI symptoms have improved. We are now waiting for colonoscopy results.

For those who have experienced GI side effects from Hydroxyurea:
• Did stopping HU resolve the issues completely?
• Were you able to restart it at a different dose or schedule?
• Did you transition to another treatment like Pegasys, and how did that go?

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preacherswife1977 | @preacherswife1977 | Feb 11 6:54pm

I could not take HU either but I did not have GI problems. I had really dry skin, sores in my mouth and my cornea was swollen. I have been on Besrimi injections since September and thankfully so far I have not had any side effects. Ask your doctor about it. My platelets were over a million when I started and are now in then 400's. Wishing you the best.

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jello13577 | @jello13577 | Feb 11 9:58pm

On HU 12 mos and I have all the symptoms of your mother. Went to ER and had CT scan and they found nothing. Also had an u/s few months back and again nothing. First it was constipation and now diarrhea for 3-4 wks.
Can't talk to the Dr because he is the coldest incompassionent person alive. He tries to make you think all your symptoms are in your head. PC referred me to another Dr who I will see in 3 wks and as of yesterday I stopped the HU so it is to soon to see if and when I will feel better. I went from 5 days a week on the med to 3 times to recently once a week. I have never been so sick on a med in my life. No strength and total weakness and excessive pain and crying constantly. I hope the new Dr is a human and helps me differently. In the mean time I drink a lot of green tea and 100 percent red grape juice plus I take an aspirin to keep my blood thin. Hope you feel better soon. Janet

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chaiyosef | @chaiyosef | Feb 11 10:59pm
In reply to @jello13577 "On HU 12 mos and I have all the symptoms of your mother. Went to ER..." + (show)
@jello13577

On HU 12 mos and I have all the symptoms of your mother. Went to ER and had CT scan and they found nothing. Also had an u/s few months back and again nothing. First it was constipation and now diarrhea for 3-4 wks.
Can't talk to the Dr because he is the coldest incompassionent person alive. He tries to make you think all your symptoms are in your head. PC referred me to another Dr who I will see in 3 wks and as of yesterday I stopped the HU so it is to soon to see if and when I will feel better. I went from 5 days a week on the med to 3 times to recently once a week. I have never been so sick on a med in my life. No strength and total weakness and excessive pain and crying constantly. I hope the new Dr is a human and helps me differently. In the mean time I drink a lot of green tea and 100 percent red grape juice plus I take an aspirin to keep my blood thin. Hope you feel better soon. Janet

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Thanks for sharing your experience- it really helps.

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ksyren | @ksyren | Feb 12 10:21am

This forum has truly been a game changer for me in my walk with ET JAK2+! So much is wrapped in shadow or just not communicated from the medical standpoint. It's so helpful to no longer feel out there and alone, isolated with this condition that even the ER doctors can't pronounce (that'll shake your confidence). Thank you all for being so transparent.

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