Yellow toe nails

[jodary]

Hi

Have been on Hydroxy for 5 years 500mg daily and all of my toe nails are now yellow. It’s not fungal nail , is this usual? Am only too pleased that it’s not my fingernails which are still ok.

[Cat1001954]

my big toes are slightly yellow too no fungus

[jodary in reply to Cat1001954]

Have you been on it long? It’s only about a year ago my big toes started , now it’s all of them. Am only in the lowest daily dose but think I will have to increase soon

[Cat1001954 in reply to jodary]

Over 3 years

[jodary in reply to Cat1001954]

Over 5 for me but this only in the last year

[Janbu in reply to jodary]

My middle toe has been swollen for sometime, no apparent injury, then the skin fell off and the toenail started to darken and a few days ago it started to bleed spontaneously and this morning that whole nail came off. It was never are sore or injured . I’m hoping that’s it now!

[hunter5582]

Nail discoloration is a known hydroxyurea adverse effect. You will likely hear from others on the forum who have experienced this issue. Something to watch for would be nail or skin atrophy or other dermal changes.

Suggest letting your MPN care team know. They can provide the best input.

[Solyesh]

Yes, I had severe nail discoloration while on HU - it was one of the symptoms indicating that I was fairly intolerant (nail discoloration - extreme hives - general malaise) - I wound up switching to interferons and within about 3-4 months discoloration went away completely

[jodary in reply to Solyesh]

Had you been on it long ? I’ve been on it for 5 years but this has only been for last year. I’ve been offered interferon but as my hypothyroidism is not being controlled it’s felt that this isn’t a good option for me. How have you got on with it ? I’ve been told side effects can be worse?

[Solyesh]

The nail discoloration for me was almost immediate - within 3 months of being on HU. I have done extremely well on the interferons. Was on Peg until most recently when due to the shortage they switched me to Besremi. It has worked well with my bloods being all WNL for some time now. I did have to take a break at the start of the treatment with Peg as my liver enzymes shot up - but after re-starting at a lower dose things have been OK.

I too have a mild case of hypothroidism, which I did not know until I was being monitored for my MPN. I have been on levothyroxine since and it has been well controlled.

[jodary in reply to Solyesh]

I will discuss at my appointment on Friday so thanks for your reply. I did previously mention my big toe nail and she said it was probably fungal which it isn’t and now it’s all of them !

[william-Indo]

It could caused by HU.Since your dose is lowest, no more reduction.

Try Milk Thistle to protect your liver, antioxidant and drink plenty of water.

Hope it will help

Cheers

[Threestreams]

Hello .. pleased you raised this . I have been looking at my toe nails for awhile now thinking they look weird .. not growing much and discoloured .. was thinking of painting them but I don’t like nail polish … I am on hydroxy and seen to be tolerating ok .. however really tired these days and now nails I am not too proud of . Interesting to read there are a few if us . 🙏Trudy

[kid12kg]

hi Cat1001954

[kid12kg in reply to kid12kg]

I am using hydroxy for almost 4 years now and i am taking 5 days 1000 and two days 500 mg and all my nails turned dark brown, it is true and i put them nail colours , that is what im doing. Don’t worry the doctors told ne all will be turning black. Cheers !

[jodary in reply to kid12kg]

Even your fingernails ?

[kid12kg in reply to jodary]

Yes both

[socrates_8]

Hey there Jodary...

In a recent POST, I was talking about the ability to enable 'Earlier Detection' for MPNs...

Although your question is one of a different nature, I wanted to provide you with a few Q & As pls:

* Do you have ET & High Platelets?

* Is this 'Yellowing' of your digits only on your toes?

A great many years prior to my Dx (2016), I had been troubled by 'Yellowing & Flaking' cuticle growth, however, it was mainly on my hands. There was a little w/ my toes, but nowhere near as severe...

I went everywhere for help, tried everything at that time, NOTHING helped!

After Dx, I commenced 'Low dose Aspirin' 100mg d & my nails were pretty much returned to normal after 6-8 weeks...

I had that cuticle nail issue for at least 15 years before Dx of my MPN.

Hope this might help ...

Best wishes

Steve

(Sydney)

[jodary in reply to socrates_8]

Hi yes I have ET and high platelets and the yellowing is only on toe nails. Have been on low dose aspirin for 12 years but the yellowing only started about a year ago after 4 years on hydroxy.

[socrates_8 in reply to jodary]

Jodary... hi again...

It may also be worth asking your medical team to Test you for acquired Von Willebrands Syndrome (VWS), I also have that myself... Poor circulation has much to do w/ peripheral neuropathy too...

I have found great benefits by utilising Raw Beetroot Juice (RBJ), which is full of Nitrates becomes nitric oxide in the vascular system & expands our veins & arteries allowing for greater blood circulation to oir verve endings etc...

Best wishes

Steve

[quanglewangle]

Me too. On Hydroxycarbamide for around 15 years. Toe nails all very hard. Big toe nails heavily ridged and one now has another appearing underneath . Weak finger nails are the worst problem with flaking and splitting - so I apply nail hardener frequently to keep it under control. Also got actinic keratosis spots on ear tips and across brow line and nose although I am never out without a hat. Thanks to other side effects ( peripheral neuropathy, erythromalalgia and pruritis) I have agreed with my Haematologist (although he says that these side effects are probably symptoms of my ET anyway) to switch to ruxolitinib next month - so watch this space

[MissLesley13]

I still paint mine . I have noticed that they are splitting and snapping all the time. I may go without nail varnish for a week and see what happens. I will let you know

[Hopetohelp]

My toenails are yellow too but I am not on hydroxy. Could it be the ET? Was on peg, presently on no meds for last 7 months. Toenails haven’t changed apart from remaining yellow

[jodary in reply to Hopetohelp]

That’s interesting although someone has commented that theirs returned to normal after stopping hydroxy

[Neghdar73]

Yes mine too, the nail discoloration was quick only within 8 months of being in HU.

[jodary in reply to Neghdar73]

Just toe nails ? Thank god it’s not my finger nails !

[Neghdar73 in reply to jodary]

Yes so far , and will switch to interferon after 2 months , as agreed with my hematologist oncologist.

Will post an update .

[sbs_patient]

I was on HU for about five years, with dose increased from the initial 500 mg/day to 1000. My toenails turned yellow, my fingernails were ridged, and I got skin ulcers. A dermatologist told me that I was having a reaction to HU. I switched to ruxolitinib in August 2022, and the skin and nail lesions resolved.