How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET?

Welcome to Connect, @pearly, and thank you for sharing your history.

Essential thrombocythaemia (ET) is indeed a rare chronic disease, and while I search for Connect members who have some information about the Seattle area, you may wish to view this past discussion on essential thrombocythemia (ET): Essential thrombocythemia: http://mayocl.in/2ph8TpN
I hope @twhite @piglit @deborahgrace @tessa will return to share some insights.

In this discussion, "Myelofibrosis w/ JAK2 mutation," http://mayocl.in/2oe4PaE, @wellness3070 @susanvij @bijou discuss their experience with hydroxyurea.
And, here is some information from Mayo Clinic as well:
Hydroxyurea: http://mayocl.in/2oSw3GB
Essential Thrombocytemia: http://mayocl.in/2odW8gx

@pearly, have you had any clotting complications from ET? How are you managing the peripheral neuropathy?

Thank you for the info. Initially, Sept, 2016 my platelet count was in the millions & I had what I thought were TIAs -- dizziness, visual disturbances, numbness/tingling 3 fingers lt hand --- which were temporary, maybe 3 minutes at a time or so, but became more frequent and led me to seek medical help. My oncologist does not think these were TIAs but whatever they were, they were relieved when he put me on a baby ASA/day and the hydroxyurea. He started the hydroxyurea 500 1q3days for 2months, then bid 2 months, now tid for 3months. He thinks the Lt leg peripheral neuropathy probably not due to the ET, and if not relieved in a couple months will order some MRIs & PT. Platelets gradually going down. Wondered if anyone else had these symptoms?

Hello @huronshores

I appreciate you posting your concerns about Hydroxyurea and the redness on your eyelids and eye tissue.

You do not mention if you are taking this medicine as an IV infusion or as an oral medication, nor how long you have been taking Hydroxyurea. I did, however, find some information on Mayo's website regarding possible side effects of this med if you are taking it orally. Here is the link, 65https://www.mayoclinic.org/drugs-supplements/hydroxyurea-oral-route/side-effects/drg-20068109.

As I read the article I did not see the redness of the eyes mentioned, however, everyone has different reactions to meds.

I would like to invite @patowen1 and @janemichele to this discussion as they are also taking this med.

Did this redness start soon after you started taking Hydroxyurea? Have you discussed this problem with your doctor or pharmacist yet?

Taking oral Hydroxyurea for over two years. 500mgx2 day to begin increased to 16 pills week. Platelets seem to go up and down and up in 600 range in Jan. So Haematologist wants to increase again. Eye problem began in August 2019 and has continued in various ways since. Have been to Optometrist, Physicians assistant here and they don’t have knowledge of the meds being cause. Have told Haematologist but he did not even look at my eyes and suggested I get more sleep! He does not want to hear about this it seems. I think I may go off the meds to see if eyes get better.

Taking this to treat ET high platelets. Anyone have this medication cause problem with eyes? Red bottom eyelids, redness inside eye tissue etc?

Hello @huronshores. You may notice I moved your discussion and combined it with another discussion titled, "Side effects of hydroxyurea, ET." I did this so a few of the members discussing the same topic would have a chance to see your message. I'd like to also invite @pearly and @wasbilly back to this discussion. @huronshores, have you considered getting a second opinion or discussing this issue with a pharmacist, who may be more familiar with the side-effects and potential issues it can cause? It is best to stop a medication under the advisement of a pharmacist or physician, so it may be worth your time raising the issue again to make sure you are doing so safely.

Hello....my name is Claire and I have been on hydroxyurea for 1year and 2 months. I do not have redness of the eyes but
I do have redness of the scalp which started long before my diagnosis. My doctor says it is from the blood cancer myeloproliferative neoplasm, I do not have redness anywhere else only some itchiness

I also have jak2 and ET. Good luck with your treatment

@claire39, does redness of your scalp cause you any other symptoms like itching or discomfort? Has hydroxyurea helped with your management of your ET and myeloproliferative neoplasm?

The Hydrea somewhat controls the itchiness but not completely and my energy level is better, mostly in the morning, but by early afternoon I start to fell the fatigue. No other symptoms that I am aware of.