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

Hi Pearly, I’m Tammy, almost 61 year old diagnosed at about the same time as you. I have an out-if-control Calreticulin gene in my bone marrow. I will have to deal it for the rest of my life. It’s very rare and, just like you, my platelets would be nearly at 1 million. I’m a little confused by the number you mentioned. Sorry. My number is reported as 800 but then x 1000, or 10 to the third, or 10 cubed. Whichever way you report it, it’s equal to 800,000. We have gotten it way down to 523, or 523,000 with Hydrea. That’s a good number, but it also means that I don’t produce the other parts of my blood so well. It’s better than throwing a clot or bleeding out if I had an accident. Anyway, since it’s rare, we need to be here for one another because I highly doubt if we will find a physical local group. Prayers for you, your family, care team and your endeavors.
Tammy

I have MDS/MPN overlap with Thrombocytosis and MF and I've been on Hydrea to reduce my high platelet count for 14 months now. No itchness but I do get fatigued around 2 PM every day. A 30 minute nap is needed. But I'm 73 now and I don't think it's uncommon for someone my age to get fatigued. I also have HSN type 1 which is a hereditary form of peripheral neuropathy that comes down on the X chromosome. Thanks mom. I do have problems walking and with balance and sleeping at night is a problem because my legs cannot touch without pins and needles going off. So I sleep in a recliner. Just saw a Hematologist/Oncologist at the VA for an exam and he concluded that because I am JAK2 and SRSF2 positive that my life expectancy us about 2 years. I've had MDS/MPN for about 2 years so I guess either he's wrong or I'm a dead man walking. I prefer to think that this VA doctor is an ass. Strange thing - looking at me you wouldn't think I was sick. And that works for me.
Sorry, had to vent after getting this news.

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.

@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?

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

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

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 @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?