Diarrhea with ET on hydroxyurea

[blueseas45]

Hi Everyone. Has anyone with ET on hydroxyurea had horrible diarrhea? I am having horrible diarrhea for two weeks now. My GP gave me a stool sample kit that I am going to take to the lab tomorrow (8-09-21). Then I am supposed to go to a gastro guy. I am starting to think this drug causing this.

[hunter5582]

Diarrhea is a common side effect of hydroxyurea. online.epocrates.com/drugs/...

It can compromise the intestinal endothelium causing diarrhea or constipation. The latter happened to me. We are each different in how HU affects us. The good news is that if you cannot tolerate HU there are other options.

[blueseas45 in reply to hunter5582]

Thanks hunter5582. Curious how many other people are having problems too. I was constipated for a long time then this started. Thanks for the link.

[Belgobrit72]

It seems ages ago but I am pretty sure that I had to take an anti diarrhea tablet for the first 3 weeks or so of treatment. It was prescribed by the consultant at the same time and was definitely needed.

[blueseas45 in reply to Belgobrit72]

Thanks for the reply Belgobrit72. What's weird is that I have been taking HU since June 23. I was constipated till the recent problem with diarrhea. Wonder if this is a ET with CALR thing and not a ET with jak2 thing? I quit taking the HU Sunday night on my own. I am still taking a baby aspirin everyday. The diarrhea seems to be easing off now. My platelets had dropped to 506 at my last blood test Friday August 6 , 2021. My doctor doesn't know I quit taking the drug yet. I am getting close to the upper end of of the proper platelet count. I have a blood test coming up in two weeks.

[givingITMybest]

I am interested in how people respond your question. When I had babies 35 years ago the doctor cut my sphincter muscle by 90%...long story which includes colon rectal surgery and now a Medtronic Interstimulator to assist in control. For 6 years I did well with the device along with eating a high fiber diet. But in the past 2-3 years I've quite a bit of trouble and now am back to using sanitary pads. I've wondered why my high fiber diet was not doing the trick, but just recently became aware of the diarrhea side effect of HU which I've been on for nearly 3 years. My sense now is this side effect is the cause of my struggles with this issue. Not sure what choices there are except to manage the best we can. Good luck and thank you for asking about this issue.

[blueseas45 in reply to givingITMybest]

Thanks givingITMybest. Sorry to hear about all the problems you are having. Hopefully more people will respond on this issue. Best wishes.