Hello
I’m taking Hydroxycarbamide 500mg daily for the last 3 years for ET jak2 positive.
Yesterday 4 of my fingernails came away from the skin bed…… so sore and painful.
I have asked Doc Google who says this can be caused by long term chemotherapy medication.
Has everyone had this issue and if so how did you deal with the issue
Thanks Yvonne
That sounds painful. I'm clinging on to my nails so far (I've been taking Hydroxycarbamide for about eight years), but they and the area around the cuticles have definitely changed.
Hi I have been on Hu for many years and I have never had any problems with my skin and cuticles at first starting them I was feeling nauseous but put on domperidone and you have to watch when and if we get a hot summer or if you are going away to wear a baseball cap and more importantly wear factor 50 as Hu can make you photosensitive to the sun a dark colour t shirt or light linen top with sleeves Hu can make you tired if you can a late highly regarded consultant told me if you can have a couple of hours sleep every afternoon I would rather than your GP or Google next time you see your consultant talk to your consultant or mpn nurse specialist about your worries about your finger nails and cuticlesStay safe
Scottish terrier
Hi just to inform you can have children. You will be monitored and medication changed.
Most people of child wanting age are not put onto Hydroxicarbomide. Was this explained to you?
Sorry to hear about the nails separating. Onycholysis can occur for a variety of reasons. You are correct to think that hydroxycarbamide would be on the list since long-term use can cause nail atrophy and other issues. I am not aware of any way to prevent this adverse effect other than to discontinue the hydroxycarbamide. Fortunately, there are other treatment options. This would be an issue to discuss with your MPN care team.
Hope you find resolution soon.
At the start of my cytoreduction journey, I was on HU for a couple of months. Almost right away I started having issues (rashes; shortness of breath) and then all of my nail beds turned purple/black. My MPN specialist said this was a known potential side effect of HU and that it appeared I was HU "intolerant". Switched to Pegasys.
thanks everyone for your responses. As advised I will contact the my haematologist advice nurse tomorrow to discuss if a change in medication may prevent this from happening again.
Yvonne 🥹
how horrid. You must have been upset and terrified.
I was on hydroxi for 6 years and on a higher dose. I didn’t experience nail damage. Do check with your heamo.
I’m sorry that this has happened to you. I was on Hydroxy for 23 years until the tablets stopped working with no side effects except itchy skin at the end of this treatment. I then was put on Anegralide - to which I was intolerant. I am now on Peg interferon with weekly injections. Not all meds suit everyone I am finding out. You are doing the right thing in speaking to your consultant. If it’s one piece of advice through my experience over the many years of having a variety of MPNs it’s this:-
Makes sure your Consultant is a specialist in MPNs and not just a general Haematologist!
I was taken off HU because after just three weeks the skin on my fingers started peeling off (as one of several side effects). I noticed that I didn't need to cut my nails for a few months after that. Everyone is different - thankfully there are other medications available.
My toenails haven’t been right for two or three years now. I’m on same dose of Hydroxy as you are, starting six years ago. Nails are powdery and white in colour and big toe discoloured and cracked down the middle. I believe it is the Hydroxy to blame. I also had a front tooth snap straight off for no reason and wondered at the time if the HU caused a lack of something in teeth. Could be the E.T. of course, but HU side effects definitely mention nail imperfection. Your experience sounds so painful and awful. Hope they get better soon.
Ouch, I am so sorry to hear. I've been on HU for 4?yrs and noticed no particular change. Reaction to HU is so incredibly varied. Is there any treatment they can do to reattach the nails?
Hi, bet you got a fright when that happened! I have been on hydroxy four years now and noticed from time to time that the distal edge of my fingernails would sometimes feel very tender, particularly in cold weather and also my hair follicles would also feel tender. I know my nails have become much weaker and 'dry looking' and like many of us on this forum have lost some of my hair which has also gone from curly to frizzy....it takes some taming. I am slowly coming off hydroxy as my platelet levels were increasing so my dose had to be increased and at that point i decided to ask to be transferred to pegasys. So I hope in the not to distant future that I may see some improvements in my hair and nails. Good luck with your journey.
After about five years on HU (I have PV), I got serious skin ulcers on my hands, and my fingernails turned thick and yellow. My hematologist then reduced my HU dose, but the lower dose no longer helped to control my HCT. After consulting a MPN specialist, I switched to Jakafi, which has been working well for me for 18 months now.
Yes, unfortunately, Hydroxyurea was not for me, although many on this site benefit from it and have very few side effects. That being said, it did cause my hair to thin; my fingernails to become very thin and peal away from the nail beds;rough and dry skin patches and extremely upset stomach and constipation. Since these side effects differ individually, you must weigh out the pros and cons for you. I had to switch to Jakafi and so glad I did! I feel great on it and no side effects, however, I am on a low dosage, but it works.I should mention, it makes your hair thicker too!
Sorryto hear that, I can imagine how painful it is. I have been taking hydrea 500mg 5 days weekly for almost 5 years, and I have no problems of my nails.Hope you'll have a solution soon and be better xx
Thank you all for your kind and thoughtful reply’s
That's not good I have polycemia vera and jak 2 positive I have 2 x500mg hydroxycarbamide daily and my nails are really strong phone your key worker at the hospital explain it to them.x
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