Hydrea and joint pain

yes, I've been on hydroxy urea since Nov. 2025. I noticed recently my joints ache, knee, hip and ankle. I have osteo arthritis, but wondering if this drug is making it worse. I'm very active retired teacher and owner of greenhouse
business selling annuals , perennials etc. The pain is causing it hard to get going in the morning!!! I take 3 one day 2 the next alternate.

Welcome to Connect @krag1949 As owner of a greenhouse, this is your super busy season! I'm sure having achy joints can really impact your day! What was your diagnosis that has you taking HU? Has it been working to lower the blood counts if you have either ET (essential thrombocythemia) or polycythemia vera (PV)? Or is it another type of blood condition?

yes this achy joints situation just started..I have high white blood cell count and platelet count. At first it was thought I had an infection from surgery on foot. done in 2024. My internal medicine Dr called me in July and said my white blood cell count was sky high. Was sent to infectious Dr. in Memphis and given Dalavance to stop infection, this only made white cell count go higher. Developed a cough and thought I had pneumonia after subbing for a teacher that had viral pneumonia. Was put in hospital after visit to ER for obervation where enlarged spleen caught their attention. Sent to hemotologist at Baptist where I was diagnosed with both high white blood cell count and platelet. Don't know abreviations for these. You could have knocked me over with a feather after hearing this diagnosis. Was started on Hydroxy urea alternating 2 one day 3 the next and one baby aspirin a day. so thats where I am. I have osteoarthritis in spine an hip but this is pain making it hard to sleep at night. Walking is hard and need ankle replacement surgery. so thats where I am

@krag1949

You're going through so much, krag1949. I'm so sorry.

@krag1949 Since this is a newer diagnosis and about 6 months on the HU, your doctor may consider adjusting your dosage as your elevated blood numbers decrease. Sometimes reducing the meds can still keep the blood cells to a more normal level while still being therapeutic.

Have you mentioned your increased pain level to your hematologist? How have your blood counts been? Has the HU been successful in lowering and controlling the platelets and WBC?

Sorry for all you’ve going through,@krag1949
It is quite an adjustment for you!

Here is m experience with hydroxurea (HU):
Diagnosed with polycythemia vera February 2026. High hematocrit (red cells) and platelets. Taking two 500 mg HU daily. Lowered my platelets pretty quickly. Red cells/hematocrit just started going down.
I have osteoarthritis also. Had both knees replaced 2 and 3 years ago and they have felt great. Lately they have started aching, along with shoulder, wrist and fingers. Seems dependent on if I’ve been doing more yard work or spring cleaning. Along with muscle aches. Mayo does list joint pain as one of the rare side effects of HU.
Heat seems to help. Haven’t tried icing.
Ask your doctor about taking any meds for the pain, as you want to be careful of drug interactions with HU.
Hoping for the best for you!
Barb

I started Hydroxyurea the end of March. The first week I had a dry throat and cough at night but that went away. Then I started having pain in my shoulders, neck, and back so I worked out harder. By the third week it was significantly worse and included hip pain but I thought I over did it. By the start of the 4th week I was in agony and thought I had the flu when the fever and constant chills began. It took a variety of strong pain meds just to make it through the day and the fatigue was to the point I couldn’t stay awake. After stopping just one I felt like a new person the next day. It’s been two weeks and I’m finally back to normal. That was a nightmare! I’m waiting to see what’s next on the list. PS-I ignored my symptoms and suffered unduly because of it. Listen to your body and get off that shit! I was only on 500mg daily. Or at least skip one and see how you feel. Best of luck!

I am taking Hydrea 500mg x5 plus 1000mgx2 at weekend for the past 7 months.
I've noticed increased pain particularly in my shoulders The pain gets very severe during the night.I take paracetamol for the pain. I know anti inflammatories are not advised.I would like to hear from fellow sufferers of how they coped with the arthritis/muscular pain

@krag1949
Hi I have ET and Jak2, my platelet levels were 1200 and I took 500mg Hydroxycarbamide daily and baby aspirin the count went down to 600 now slowly increasing so I am taking 1000mg Hydroxycarbamide 3 times a week and 500mg 4 times a week. I had very sore joints, couldn't move freely especially first thing in the morning. I tried a hemp oil called Green Brothers Move (I live in New Zealand) and what a difference. I am 63 and my body is now pain free, no more neuropathy or stiff acrchy joints, I can jump out of bed in the morning, garden for 5 plus hours a day if I want to, walk freely my life has changed from constant pain to no pain. I work in a busy kitchen, walking on concrete floors for 7 or 8 hours and no pain. I asked my doctor before starting the Hemp Oil and she said it was fine. I totally recommend hemp oil as I now have an active pain free life. Good luck with your journey.

@loribmt yes blood counts normal I dont see him til July would be great to lower dosage. I will ask