What precautions have Dr's advised you when taking Hydroxyurea?

Diagnosed with PV, with high hematocrit and platelets in February 2026. Currently on 1000 mg HU 4 days and 500 mg 3 days a week.
My oncologist only told me most people tolerate HU well. That’s it!!
Read up on the side effects and got tips thru this site. No issues with blood, sweat or sex with hubby. What works for me is taking HU after dinner. Full stomach - no nausea, and if I get fatigued, hey, it’s at the end of the day and going to bed soon anyway 😊
HU did give me mouth and lip sores/ulcers at first. Learned from others to make sure mouth is moist - I have a small amount of water in my mouth before throwing in the pills, followed by a lot of water to wash them down. I pour the pills I need from the bottle onto the bottle cap and then toss them into my mouth from the cap. That way I never touch the pills.
No more mouth sores! However I did get a nasty lip ulcer. I figured sometimes when throwing the pills to my mouth the pills brushed my lips. My solution is to smear my lips with lip balm/chapstick before taking the pills to coat and protect the lips. No more problems.
Good luck to you on this journey. Everyone is different, but this works for me. Side effects of the HU are minimal compared to how bad I felt before treatment. Not to mention being at high risk for strokes, clots and heart attacks if untreated.

My Mayo-trained oncologist has never said anything about this.

May I ask, what's your source?

Taking questions to our doctors -- not Google -- is always best.

It's true that, once you have an MPN diagnosis, the American Red Cross will no longer accept your blood donations. This is not because handling your blood puts anyone at risk.

Instead, it's that no one knows yet whether putting your blood into someone else's bloodstream might initiate an MPN.

Yes, there are lots of unanswered questions about our weird blood cancers!

@petoskeyb As for the mouth and lip ulcers/canker sores, I keep a bottle of prescription Valtrex in my medicine cabinet. At the slightest hint of an impending sore, take one and then another 12 hours later. No sore.

I do this exact same protocol thanks to the advice here and it works well. When I do get a lip or tongue sore I make sure to take all my vitamins, especially C and D. Have heard D deficiency is tied to blood disorders? I also drink a ton of water when I wake up. Staying hydrated and active really helps.

janemc
Sourced suggestion from Mayo Connect: @eileen11108 | Jun 4, 2025
I have avoided this issue by swirling water around my mouth, tip in the Hydroxyurea capsule, swallow and then finish with the rest of the glass of water. Also, I never touch the capsule as I slide it into a spare lid first.
Best wishes, Eileen

The lip balm on the lips was my own idea

@petoskeyb

In my comment, I should have mentioned bgerges, to whose question I was responding:

"I have read that precautions have to be taken with body fluids (bathroom, blood, sweat and sexual.) I was wondering how others who are talking HU are dealing with this and what their Dr has instructed them to do."

I was commenting that my oncologist had never mentioned any of this.

The suggested techniques from you and others absolutely spare your fingers or lips from touching an HU capsule. Thank you!

I buy medical grade rubber gloves on Amazon and always wear at least one on the hand I am dumping the HU into....I put one on both hands in the AM when I take two HU and usually only one in the evening when I only take one HU. I then peel the glove off inside out and in the garbage can it goes...lots of water works for me and I drink a small can of V8 energy drink in the AM right before my 2 HU's and eat a small container of pudding or applesauce that I get on Amazon, helps to calm the tummy down a bit. I then lay down for up to an hour with my little dog....she is always happy for a nap with dad up on my bed. I also take an anti nausea RX pill (Ondansetron ODT) an hour before my HU.

No live vaccines because HU suppresses your immune system. You can do Flu and nuemonia but not shingles or other live ones.

My oncologist approved all vaccinations, covid, flu, shingles, rsv, dtap, pneumonia. The new shingles vaccine, shingrix is ok, don't know if alive or dead. Only restriction taking HU is must avoid being in sun, need to wear long sleeves/pants sunblock etc. Also no NAids, aspirin, ibuprofen, advil, melaloxicam (spelling?)

@1995victoria

Once again we see, different doctors tell us different things.

In my case, my oncology nurse recommended a daily low-dose aspirin. My oncologist told me that an occasional naproxen was fine.

My excellent Physician's Assistant then steered me towards Tylenol, as it's so much easier on the kidneys. I had been sure that Tylenol didn't work for me, but when taken as directed on the label -- it does!

My PA also prescribed meloxicam, another kidney-friendly analgesic, after I tore up my knee. On bad days, a single low-dose meloxicam reinforces the Tylenol to good effect.

My doctors have also approved any "dead" vaccines, and I will get flu and Covid boosters soon.

Ask your doctors what's safe for you.