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

Have been on Hydroxyurea 2 1/2 years for ET. 18 pills per week with platelets up and down and up again. During past 3 weeks having painful hip Bursitis affecting right upper thigh. Have not had any such problems before. No back, knee, hip problems ever. So I am wondering if this is side effect of taking Hydroxyurea.

I have been taking Hydroxyurea daily for nearly 10 months. I have Langerhans Cell Histiocytosis, skin only, which was diagnosed in June of 2016 at Mayo Clinic, Rochester. Topical medications have not been effective or were not tolerated well, and after being diagnosed with chronic myelomonocytic leukemia last July, my doctors at Dana Farber prescribed Hydroxyurea. Although my CMML has more MDS characteristics than MPN, and my platelets tend to be below normal range, monthly blood counts do not seem to indicate adverse effects from the medication and the skin has greatly improved. I do notice joint pain in my shoulders ,elbows, and knees when I wake up. The pain seems to subside over a period of about an hour, however. This started about 4 months after starting the Hydrea. My cutaneous oncologist thinks that it may be a side effect. I also have developed some hyperpigmentation on my cheeks, which is probably a side effect.

Has anybody experienced or heard of memory issues or mild cognitive impairment (MCI) as a side effect from taking hydroxyurea?

Hi @tresman10, you'll notice that I moved your message to this existing discussion about hydroxyurea and ET. I did this so that you can connect with fellow members like @huronshores @claire39 @pearly @mjpm2406 @texastee59 @cblowers1 and others.

According to this article by Mayo Clinic confusion and seeing, hearing,or feeling thigs that are not there are listed as rare effects.
– Hydroxyurea (Oral Route) https://www.mayoclinic.org/drugs-supplements/hydroxyurea-oral-route/side-effects/drg-20068109

Tresman, do you suspect that the treatment may be mimicking the symptoms of mild cognitive impairment?

I have been taking Hydroxyurea for about 3 years for ET. Have not noted the confusion, hearing or seeing things that are not there. However, Mayo Clinic has that listed as rare side effect. Everyone is different so maybe this should be discussed with Dr.

I have been taking Hydroxy for two years for MDS/MPN-RS-T. Not aware of any side effects.

I am wondering. Memory issues began shortly after beginning hydroxyurea. Just not going to chalk it up to coincindence. There must be a connection. I have had some of the "rare" side effects such as black strips on the finger nails. 3 Dr's so far since 2013, nobody connecting the dots on the two conditions. Was 61 at the beginning if all this. On hydra since 2013.

Active Senior, I was diagnosed with ET and taking Hydroxyurea for a few years. For over a year, I have had red, raised area along edges and under bottom eyelids. Optometrist, Doctor, Hematologist don’t think it related to Hydroxyurea. Pharmacist thinks it could be. I can see instances of other people with problems like this, when I researched online. In fact, the Hematologist did not even look at my eyelids when I mentioned It. He said to get more sleep! Has nothing to do with sleep! For past four months, I have had very sore right hip, upper leg etc. Went for X-ray recently and it now shows severe Arthritis, so will have to see Specialist. I had not much problem with Arthritis previously, a bit in my hand. I can see in list of side effects, that Hydroxyurea can make Arthritis worse. I am wondering if that is what is going on here. I have done some research on this medication because I like to know what I am taking. I have seldom needed any medications or medical care, during my life. Yes, I realize advancing years can bring on medical problems, but it seems like a lot of ‘falling apart’ since I’ve been taking Hydroxyurea. I am trying to see what my options are, in order to maintain quality of life. This is my experience and of course, different people may have other results.

I have had Essential Thrombocytosis for almost 6 years now(with 1,250,000 platelet count) Was started on Hydrea 500mg the very next morning. First 5 daily then gradually, decreased to the now 2 a day. Diagnosed and confirmed with JAK-2 in early May 2016. I have a lot of other issues which can be aggravated by the ET but for the most part I have been under a great Hematologist/Oncologist here in San Antonio, TX., after being diagnosed in the middle of Venezuela and coming here for Bone Marrow Biopsy and confirmation. I have been on here before but have not written in awhile. Busy caring for my elderly Mom who after 5 years caring for her passed away in December. I have not read all the new discussions but I do want to say that I have had in the past year and a half or so, to take epidural steroid injections for a lumbar stenosis causing severe sciatica in my left leg. It seems to cause my platelets to go up to a concerning range and we have to adjust dosage for that. Also, I have had severe peeling and blistering of one foot. (Crazy it is not both) but treated it as athlete's foot for months. Then, I asked my hematologist if it could possible be an effect of the Hydrea, since I had read that skin changes could be an effect. She sent me to a dermatologist who scraped my foot twice in two weeks and sent it off to be studies. NO FUNGUS, Just seems to be an effect of the Hydrea. Could be worse, although if I don't take care of it it gets pretty sore and hard to walk in any shoes or sometimes even without shoes. All this to say, it could be a lot worse. But wondered if any of you have had any problems like this with the "HAND-FOOT" disease that I have found out people with other types of cancer and chemo treatments have experienced? Have had no real problems with my hands so far. But I do keep a heavy cream on my feet and cotton socks when I have a flareup. On a side note, I had had COVID and passed through it. No real fever or loss of taste or smell... but it did exacerbate my asthma, bronchiectasis, and lung issues which took two rounds of antibiotics and steroids to get over. I am just now feeling like I might be on the mend. I am grateful for every breath of air as I have had lung problems all my life. A funny thing happened last week. They had called me to donate plasma. I have always wanted to give blood but never been able because of Hepatitis A when I was 14. However, after talking to the young man and telling him about ALL my and DX, he supposedly checked with his nurses and old me to come in for an antibody test. Well, I took my long list of ailments, along with a list of all my meds; I actually took in a bottle of my Hydrea. I told them I would be glad to donate plasma but I couldn't believe they would want it. They had not heard of anyone with ET and thought at first I said TROMBOCYTOPENIA. I explained the disorder/disease to them and after conferring with several higher ups, they told me that I was placed on a permanent deferral list. 🙂 I tried to tell them. Hope everyone is well and that no one has sever complications if they do get the COVID. I think my recuperation was helped by the fact that even before I tested, (I really thought it was just my lung issues of each winter as I had no fever) I called my pulmonologist and requested a Zpak and antibiotics. TOok two rounds, but I got ahead of it. When my husband did have fever and tested positive at the VA, I figured I should test and sure enough it was positive. God bless each of you. EsperanzaM

Welcome back @esperanzam. You'll notice that I moved your message to this existing discussion about Essential Thrombocythemia and the side effects of hydroxyurea. I did this to reconnect you with fellow members like @huronshores @mjpm2406 @lefsequeen @tresman10 @cblowers1 @claire39 and @shenriq. Perhaps others have had experience with blistering skin on the feet. According to to this article by Mayo Clinic blisters on skin is listed as "incidence unknown" meaning it is quite rare.
– Hydroxyurea (Oral Route) https://www.mayoclinic.org/drugs-supplements/hydroxyurea-oral-route/side-effects/drg-20068109

How are they suggesting to treat your foot?