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Does anyone have stomach issues with hydroxyurea?

Posted by bluebird43 @bluebird43, Feb 18 11:51am

I have been on 1000 mg 7days a week but was prescribed an additional 500 3 days a week. I’ve been on hydroxy for 5 years and only started having issues when the dose was increased. My doctor changed the dose because my last hematacrit was 45.4. I’ve been taking Pepcid but don’t want to go down that road. For 5 years before being put on hydrox, I did phlebotomies but my platelets kept on rising till they were 800. Don’t know what is more important , platelet level or hematacrit. Thanks any answers.

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didyolsn | @didyolsn | Feb 19 11:23am

Hydroxyurea keeps my platelets down at a normal level, but I still regularly have high hematocrit. High hematocrit means that there are too many red blood cells in your blood, and this can cause clots. Because of my high hematocrit level, I get phlebotomies, which reduces the hematocrit level.

When you get your regular blood tests done, if hematocrit is at 45 or above, you need a phlebotomy. Hydroxyurea doesn’t bring down my hematocrit, but phlebotomies do.

So what I’m saying is that you may need both HU and phlebotomies to keep those numbers under control. And maybe not even that extra HU.

My best to you on this journey. It’s been 2 years for me and I’m still learning.

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lindakay55 | @lindakay55 | Feb 19 12:25pm

At my recent doctors appt for newly diagnosed PV, he wanted me to up my HU to a 500 mg pill every day. I had been taking it only 4x week. My Hematocrit had gone down to 46.3. He said that with women they like to see the Hematocrit at 42 or below.

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debhammel | @debhammel | Feb 19 3:43pm

Do you take HU on an empty stomach? If so, you may want to try taking it with meals. When I started on HU, I asked my oncologist about taking it with food as I was concerned about possible stomach issues. He said it was fine to take it with food.

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maine | @maine | Feb 20 6:00am

I'm taking 1000mg every other day with 2 cups banana and juice blender mix. Might be worth a try.

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nypara66 | @nypara66 | Feb 20 6:33am
In reply to @didyolsn "Hydroxyurea keeps my platelets down at a normal level, but I still regularly have high hematocrit...." + (show)
Profile picture for didyolsn @didyolsn

Hydroxyurea keeps my platelets down at a normal level, but I still regularly have high hematocrit. High hematocrit means that there are too many red blood cells in your blood, and this can cause clots. Because of my high hematocrit level, I get phlebotomies, which reduces the hematocrit level.

When you get your regular blood tests done, if hematocrit is at 45 or above, you need a phlebotomy. Hydroxyurea doesn’t bring down my hematocrit, but phlebotomies do.

So what I’m saying is that you may need both HU and phlebotomies to keep those numbers under control. And maybe not even that extra HU.

My best to you on this journey. It’s been 2 years for me and I’m still learning.

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@didyolsn Same for me. This seems to be protocol. Some are lucky and don’t have high platelets with PV. If that’s the case usually no HU is needed for them.

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jackiecarey | @jackiecarey | Feb 20 9:01am

hello,

I have no itching at all..I don't shower every day either. One more thing, I use AI and it said B12 and Folate increase your red blood cells..I was taking a B complex every day. Once I stopped my hematocrit not only stopped growing but my last visit it dropped a full gram..Please don't do anything until your hematologist says it's ok.

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