Side effects of Hydroxyurea, ET

Posted by pearly @pearly, Apr 9, 2017

I was diagnosed with Essential Thrombocythemia last November and am on Hydroxyurea 1500mg daily in an effort to reduce my platelet count, still in 9000s. Developed peripheral neuropathy & pain left leg, hip to foot. Oncologist thinks due to arthritis back per X-ray, wondered if others have this also, maybe due to the disease or meds?. Dr. says rare disease so difficult to predict outcome/symptoms. Anyone know of support group in Seattle area for this? Have called the local hospitals, cancer lifeline, etc.; no positive results.

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?

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@kanaazpereira

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?

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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?

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@huronshores

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

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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?

Liked by janemichele

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@hopeful33250

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?

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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.

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

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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.

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@huronshores

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

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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

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@claire39

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

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

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@claire39

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

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@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?

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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.

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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.

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STATISTICS AND AVERAGE ARE ONE THING AND ANOTHER REAL LIFE, CONTINUE FORWARD

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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

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@texastee59

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

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@texastee59 Hello Tammy, and welcome to Mayo Connect!

I'm glad that you joined this discussion on Hydroxyurea. I have had three surgeries for a rare type of cancer and I understand how good it is to connect with others who are also dealing with a rare disorder.

How are you feeling now that your platelet count is lower?

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Hi Tammy,

I have MDS/MPN overlap with Thrombocytosis and MF. My platelet count was about 800,000 when I started on Hydroxyurea in January 2019. My platelet count is now about 250,000. Some of my other blood numbers are just outside the normal range but most are within the normal range. I go for blood work every month at Sloan Cancer Center. According to the Leukemia group at Sloan, my combination of three blood cancers is extremely rare so I joined their research group so they can run experiments on my blood and bone marrow. I’m told that I have a 30% chance of my disease mutating to full blown leukemia but a 70% chance it won’t mutate. I’m liking those odds. If it mutates or the Hydroxyurea stops working I suppose I’m facing a stem cell transplant. Hopefully that’s not in my immediate future. I also developed 4 leaky heart valves and had to have an ablation in December. The ablation went well and they stopped the extra 22,000 PVCs (extra beats) I was experiencing every day. The folks at Sloan said that there is research that links the JAK2 mutation gene with cardiovascular disease. Something called CHIP. So these mutations that we carry have found other ways to torment us. A gift that keeps on giving.

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