I started on hydroxy 2021 and afterwards began having quite frequent nose bleeds. They gradually ceased and I was fine until recently. My hydroxy dose has doubled in the last few months . Is this jjust coincidence? The nose bleeds aren’t too bad but a nuisance. After the earlier bleeds, I was eventually checked by ENT consultant who found nothing wrong.
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Hi @KateS, thank you for posting. We’re sorry to hear about the nosebleeds- appreciate they must indeed be a nuisance for you! Do you mind me asking if your haematology team are aware that these are continuing and impacting you?
In case it’s useful at all, this resource from Macmillan goes through common side effects one can experience with Hydroxycarbamide- Hydroxycarbamide | Macmillan Cancer Support. As it says here, Hydroxycarbamide can cause low platelets, and low platelets can result in e.g., nosebleeds. Do you mind me asking if you’ve had any blood tests done recently?
As with anything, it’s always on an individual basis, so please do raise this with your team too so they can help you confirm the cause of the bleeds and consider how to help you manage/alleviate them, too.
Please do give us a call if you’d like to talk anything over (0808 2080 888).
Best wishes,
Tanya.
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Thank you Tanya. I am on the hydroxy as I have Myelodysplastic syndrome (MDS)/Myeloproliferative neoplasms (MPN) overlap and at the moment , my platelets are too high - 700+, hence the hydroxy… My haematologist was aware of the previous episodes and I will speak with her at my next appointment later this month. She was not concerned and didn’t think that they ware caused by the hydroxy. I just wondered if anyone else had had the same problem.
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Hi @KateS I am sorry but I cannot help and I really hope others can with their experiences.
I cannot better @TanyaBloodCancerUK response.
But what I did want to say is that it is such a quandary what is connected with what or affected by what or am I putting 2+2 together and making 5, who knows.
Be kind to yourself and pleased do keep posting.
Hi @KateS I just saw this link and thread–I hope your nosebleeds are diminished and that you are well. I was just diagnosed with Essential Thrombocythemia (EC) in Fall 2025. I take two 500 mg tablets of Hydroxyurea per day (one AM, one PM) which has put my platelets in a good place.
I have a long history of sinus problems, including sinus infections. I woke up very congested this morning, no fever, feeling kind of fuzzy headed (COVID test negative) and now my nose is bleeding, very heavy if I blow my nose. I’m doing some things that have helped me with sinus problems in the past (steamy shower, saline nasal spray) and trying to avoid blowing my nose. Hoping that will do the trick. Guessing this is a Hydroxyurea side effect, turning usual minor nosebleed into something bigger. Only other side effect for me of the EC/Hydroxyurea have been big reddish spots on my arms, not very pretty but harmless.
My best to all and I will report back after I see if my regimen helps with the nosebleed.
Bill
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My tactic worked! I used an item called Simply Saline, it has salt water with a can that uses an aerosol to shoot the saline far up into the sinuses, one spray on each side. I used it three times, all is well, no more bleeding. I’ll give it another spray on each side before heading to sleep.
Bill
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Hello again @ProfessorJAK, glad to read your platelets are behaving well. That nosebleed sounded horrible though, so I’m glad the nasal spray helped. Sadly you’re not alone in developing a nasal side effect to hydroxyurea. I hope you’re getting on okay still @KateS?
Not long after I started taking it for Polycythaemia vera ('PV') the inside of my nose became really sensitive, and if I sneezed or blew it too vigorously then it made it feel raw. Then it would take ages to heal. In the meantime any further nose-blowing made the rawness worse. Sorry for that gross description! All to say, I also think hydroxyurea does change our skin, maybe its thickness, and definitely how hydrated it is. Maybe something for the Myeloproliferative neoplasms ('MPN') researchers to look into, right?
Thanks for your reply @Duncan. Fortunately this was my first nosebleed since my diagnosis. I have been sticking with the use of the saline spray, that has worked great. I’m going to try to be proactive about that because I live in Florida, we have lots of pollen (and also unfortunately occasional poor air quality due to wildfires or heat inversions). A shot of saline spray in each nostril morning and night is the plan.
Be well.
Bill
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Hi @ProfessorJAK, I can see that @Duncan has already offered some support, and hope that the earlier discussion was useful to you.
Please do flag both the nosebleed episode and the skin spots on your arms to your haematology team at your next appointment, just so they’ve got it on record - even when things have settled, it’s useful for them to have the full picture.
Take care,
Ceri - Blood Cancer UK Support Services
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You’re most welcome @ProfessorJAK, I’m glad it was your first nosebleed—not something we’d ever want many of, right?! May I ask if the saline spray stings when you spray it?
Know what you mean about variable air quality, living with the threat of wildfires and freeway fumes and dry grassy air as I do in Northern California. I’ve heard good things about air purifiers helping though, if gadgets are your thing.
I’ll keep my fingers crossed that your nose heals well and you don’t have any further bleeding. As dear @Ceri_BloodCancerUK says, do always let your specialist know about any changes and certainly any bleeding. My haematologist likes to know all the finer details so we can adapt my care plan faster.
Although I’m not a doctor, I also have red spots around my skin since diagnosis. My specialist tells me mine are likely petechiae caused by my blood becoming thinner from treatment and thus it’s more able to get closer to the surface of my skin in the capillaries. I think they can be caused by coughing too as my other half has some facial ones. Again, I’d say pass these by your specialist just to be sure.
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No sting at all to the nasal spray @Duncan . If you haven’t used it before, the Simply Saline (the type I prefer) does shoot a lot of mist up the nostril. You need to use it bending over the sink, it will start dripping out. And if you pull it out of your nostril before the spray is done you can spray your eyes. There’s another type that does not have the aerosol and requires a good hard squeeze, I like the well measured dose of the aerosol.
I do have some indoor air purifiers but they don’t come close to keeping the air optimal.
Be well,
Bill
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Ah good to know, thanks Bill. Glad the saline spray doesn’t sting, after the rawness I felt inside my nose I wouldn’t fancy spraying something aggravating up there! I’ll remember it should other forum members mention nose bleeds in future, so thank you for the tip!
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