Terrys nails: I have pv jak2 and taking hydroxy, I... - MPN Voice

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Terrys nails

poly2 profile image
7 Replies

I have pv jak2 and taking hydroxy, I've noticed over the last few days I have what looks like terrys nails . They're white at the base and darker at the tips. Has anyone else experienced this, was wondering if I should speak to gp.

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poly2
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7 Replies
Mazcd profile image
MazcdPartnerMPNVoice

Hi poly2, yes you can ask your GP and also ask your haematology specialist nurse. Maz

poly2 profile image
poly2 in reply to Mazcd

Will do . Thanks maz

Solyesh profile image
Solyesh

Yes - I believe the official term is Melanonychia. It is a known potential side effect of HU. I had a fairly bad case myself when I was on HU so much so that my MPN specialist asked to take photos of my nails as part of his teaching course...Mine did go away once we stopped HU but it took about 6 months to get the nails back to normal.

hunter5582 profile image
hunter5582

Hu is known to cause issues with skin and nails. It is listed as a Common Reaction. Usually with long-term use. online.epocrates.com/drugs/...

Definitely something to let your MPn care team know about.

poly2 profile image
poly2 in reply to hunter5582

Thank you all again for your invaluable advice. I will speak to haematologist in the next few weeks. I feel like I'm falling apart at the moment. Still struggling with breathlessness and now I'm having problems with ingrowing eyelashes. I have noticed that since being on hydroxy they've got thinner and dropping out and feels like I've got something in my eye all the time. Oh the joys!!🙄

hunter5582 profile image
hunter5582 in reply to poly2

The dyspnea is definitely problematic. I experienced it with another med. It really affects quality of life.

I knew HU can also affect hair growth, but I had not ever heard of it affecting the eyelashes. Turns out that it can in fact have this adverse effect.

Hair loss

You could lose all your hair. This includes your eyelashes, eyebrows, underarm, leg and sometimes pubic hair. Your hair will usually grow back once treatment has finished but it is likely to be softer. It may grow back a different colour or be curlier than before.

cancerresearchuk.org/about-...

Sorry to hear you are experiencing these bothersome adverse effects. It will be up to you to decide whether these AEs are tolerable and worth the benefit. Fortunately, there are other options to treat PV. I was not able to tolerate hydroxy nor the chronic iron deficiency with venesections. I have done much better on the interferons (Pegasys, Besremi). The iFNs also have their own risk/benefit profile. For me, the IFNs are both more effective and much easier to tolerate.

Please do let us know what you decide to do after you speak to your care team.

EPguy profile image
EPguy

My nails were cracked etc on HU, color just a bit off. It is slowly healing since I switched to Besremi.

But you're indicating a sudden change. Sudden change in medical things is usually a sign to discuss with your Dr.

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