Proximal onycholysis

[Buggerbear]

Just wondering if anyone taking hydroxyurea or ruxolitinib has had any nail problems. Two of my fingernails (thumb and ring finger) started with bruises under the cuticles and then white areas around the base of the nail which have actually started to peel off. I went to a dermatologist this morning who said it was not sublungual melanoma or a fungus, but caused by the the medication I am taking for PV. I had to quit hydroxyurea but have been taking ruxolitinib for over 6 months. Basically, there is nothing I can do to stop my nail from separating and peeling off. Just throwing this out there for inquiry.

Thank you all!!!

[hunter5582]

I have not heard of Jakafi causing onycholysis. I do know that HU can cause nail problems. Perhaps someone else could shed more light. I would definitely review this with the MPN Specialist. Hope you find some answers. Please do let us all what you discover.

[Buggerbear in reply to hunter5582]

Thank you Hunter!! Maybe it is a delayed reaction to the hydroxyurea....who knows???

[hunter5582 in reply to Buggerbear]

Maybe?? 😒 I did have some long-term effects from HU. I guess it would be possible. Who knows???

[skipperL]

I have been on Ruxo for several years, and have three nails separating from the nail bed. It has to be the cause unless it’s just my lowered immune system. Skipper L.

[Buggerbear in reply to skipperL]

Hi SkipperL! Did your nails actually peel off or lift off. This seems to be very progressive event. I do so appreciate your help and comments.

[skipperL in reply to Buggerbear]

My nails have lifted off up to halfway, and so far have stopped there.

[Buggerbear in reply to skipperL]

Wow...not a good thing but hopefully you won't lose your nail. It takes forever, maybe a year, for a new nail to grow back. Be careful Skipper and don't catch your nail on anything...that would be very painful I think.

[quanglewangle]

Probably unrelated but I put in my experience... I am JAK2 ET and have been on Hydroxycarbamide for years. My nails are weaker and split down the middle ( thumbs are worst) so I have to keep them short and keep applying nail strengthener and thickener plus I take Biotin and Gelatine. Weirdly my toenails are getting harder. Anyone got any thoughts?👍

[Buggerbear]

Hello quanglewangle!! I welcome your experience. I too have always had weak brittle nails and use a nail strengthening cream called Hard as Hoof by ONYX. My nails have spilt from the top of the nail before, but never this weird disformation and peeling of the nail from the bottom. Never realized how much inflammation, JAK 2, a lowered immune system and medications can affect your body.Thanks and learning so much from all of you!!

[Bluetop]

Yes. I have been on hydroxy for about 5 years now. My nails started deteriorating in the last couple of year -both toes and fingers affected -splitting/lifting from the nail bed/flaking. They have tended to go in cycles, sometimes worse than other. It is something I have mentioned to my haem but it was only in passing and wasn't really picked up for discussion, Next month when I see my haem. I plan to raise it up the agenda as they are getting worse now. Other than this, hydroxy seems to work Ok for me.

[Buggerbear in reply to Bluetop]

When I was taking hydroxy (over a year ago), my hair started falling out in areas. When I mentioned it to my Haem/Oncologist, he told me I could get a wig, Guess hair and nails aren't important as RBS, WBC and platlets, but it is just another worry. Telling myself I have to accept the GOOD with the BAD.

Glad to know the hydroxy is working for you Bluetop!! Wishing you the best!

[ladyanello]

I see a new haematologist in your future...what an attitude!Wigs are hot and sweaty and I would have an already itchy scalp bleeding and scabby.

[dancingelephant]

I found your enquiry about nails fascinating. I was only taking ruxolinilib for two months when I had trouble with my big toe nail. It bled underneath and the nail proceeded to come off to about half way down. No doctor I have seen can explain this, and now I have read your post I am thinking that it is definitely connected to my medication. That was last year and of course my nail still has not grown up properly and my toe is tender - its lucky its summer and I can wear sandals!!

Let us know if you get any further news about this - I too am 72.

Best wishes,

Bonnie

[Buggerbear in reply to dancingelephant]

My two nails have pretty much come off entirely and there are some pieces still on the nail. I really miss these two fingernails, especially my thumb nail. Oncologist said it was from the Hydroxy I took it 2019 and recommended I take Biotin. Funny, my other fingernails are normal so it is still a mystery. I am still researching and will definitely update if I learn of any new about this situation. Good luck Bonnie with your big toe nail!!

[dancingelephant in reply to Buggerbear]

Thanks Buggerbear, my medication is Ruxolininib, I also have some peeling skin on my torso - I am convinced it must all be the tablets. I have a referral to Dr Harrison, to see if she can throw some light on these weird problems.

If these things are sent to try us, its certainly working!

Good luck, and best wishes, Bonnie

[Buggerbear in reply to dancingelephant]

Bonnie, You are so fortunate to be able to connect with Dr. Harrison! She is so knowledgeable re MPN's and I await anxiously for her reply, I started with 10 mg, 15 mg, and now 20 mg a day. That seems like a lot for PV and ET. Thanks again!!

[dancingelephant in reply to Buggerbear]

Hi Buggerbear, will keep you updated re my appointment with Dr H and let you know the outcome.

Best wishes, Bonnie