What are most common side effects when starting HU (Hydroxyurea)?

What medication are you taking now?

I started HU 10 months ago. I take 500 mg 2x week. Initially, my oncologist wanted me to start at 3x week. I said, "No." For a month, I took iron and 2 baby aspirin per day. Platelets improved, but not enough. So, I added HU 1x week but the platelets increased a bit. I have settled in a 2x week with HU. I haven't lost hair, but I have dry skin, dry eyes, bruising, and bleeding gums. I see the dentist every 3 months for cleanings. My biggest complaint with HU is the fatigue and I am only taking it 2x week. I plan activities for the PM as I am too tired in the AM. I still wear a mask since HU decreased immunity. I have stayed healthy with no illness and no covid. I am up to date on all immunizations including Covid, flu, RSV, Shingles, and Pneumonia. I had to reduce baby aspirin to 1x day. Take care!

Happy for you that you are off Hydroxyurea after taking for 7 years. Wanted to know how could you be off from this as Haemetologist told me it’s to be taken life long . What helped you in overcoming this and what’s your age and platelets count now. Please share

It’s an individual thing as to HU side effects… I have PV take 1500 mg M-W-F and 1000 mg the other 4 days … That has been my dose for almost 2 years now… I take the HU pills usually around 7PM after I eat dinner… Overall, I have never felt better… I stay as active as I can, riding my bike, taking walks, etc.. I have experienced thinning hair and am careful about getting too much sun( use lots of sun block lotion), but other than that, I can’t link any other side effects to the HU.. My monthly blood draws show some impacts, low platelets and RBC count, but my oncologist who reviews the results puts a priority on keeping HCT levels ~ 40 and so far, that has been the case.. I consider myself lucky that I haven’t had the side effects many have posted … Best to all…

Lynn, you say you no longer take HU. Did you change to another med for your MPN?

I was on hydroxyurea for 7 years. I tolerated it well at initial higher doses, then also at 500 mg per day long term. Did not feel like I was on chemotherapy all that time!
Some dry skin and minimal hair loss though now that I'm off of the medication I think it was more age-related!
Hope you do well!
Lynn

I read it wasn’t available until 2011? Hydroxyurea has been available since the 1960’s. It is extremely inexpensive as opposed to the over 8k a month for the other which also has a higher risk of side effects. I guess which ever works best is best but that the drug companies can rob patients that need meds such as these, should be thrown in jail!

Anagrelide is contraindicated for some people with heart problems, as it can cause arrhythmia. It was my first choice over HU, but my cardiologist nixed it. Dad, on the other hand, did well on anagrelide.

A couple of years ago, there was a shortage of anagrelide that a few people reported in another ET support group. It's possible that doctors stopped prescribing it or moved patients to HU because of that.

Sorry, the doc change insisted I needed to be on HU, did terrible bone marrow test (5 attempts to get what was needed) even tho I told him my history.

I have bern taking anagrelide for ET for over twenty years without side effects. A change in physicians resulted in nasty reactions (hair loss, upset stomach, diahhrea and uncontrolled platelets, white count dropped significantly) with blood draws and med adjustments every two weeks. after a couple months I found a doctor who put me back on anagrelide. Don't know why more don't try it. Originally I think it may have not had generic version, marketed as Agryln.