Finger Nails etc.

[pontygirl]

Good Morning Everyone,

I hope that you are all managing our various MPN’s and getting the best out of life.

Especially so here in the UK as we approach our Summer and the Sunshine is making a welcome appearance over the next few days, it has been a long Winter !

My question is probably for the ladies, I have MF and celebrated Seven (7) years March since my diagnosis.

I take 35 mg Ruxolitinib daily and 10 tablets of HU wkly.

December 2024 I asked my local Haematologist to consider withdrawing HU as I have been taking it since diagnosis.

He agreed reluctantly and set out a plan of titration of HU to 7 tablets per week but increasing my dosage of Rux to 35mg daily and I agreed.

At that stage my Platelet were the best ever at 450,000.

Come mid January my Platelets were in the upper 900,000’s and I now have a new young female Haematologist…

The lady was pleasant but horrified at my Platelets being so high and wanted to introduce yet another Drug making 3 different drugs Daily. My response was a definite No !

She didn’t know where to go after that response from me.

I suggested that I return to my original dose of HU - 10 tablets per week but I am also now taking 35 mg of Rux daily too 😬

Platelets are dropping slowly currently sat in the 800,000’s …

I want off HU if possible but ?

My Finger Nails have suddenly become a real issue breaking very easily and often half way down the nail bed sadly.

I have reached breaking point with my nails etc and I am wondering if any of you kind souls have a remedy for my finger nails pleaseee ?

I cannot push tablets out of the foil blister packs etc much too sore sadly, I have never bitten my nails but I have seen the damaging effects on other folks hands !

Covid Vaccination, I had Pfizer vaccine from the start and we have had Covid x2 mildly, my husband and I did very well with it and I personally feel grateful for the Vaccines etc, we are booked in for early April.

I wish you All a good week with some Sunshine and wearing Sunscreen of course. 😁

Whilst managing your MPN whatever type, and still enjoying life as much as we all possibly can.

Maria x

[MissLesley13]

My fingernails also break a lot . I am forever having an own moment when a break gets caught. I had to get my son to take my tablets out of blister packs as I also couldn't manage without it being sore. I am just getting used to side effects with nails etc. I started hydrea in September. I am also in u.k and getting us3d to putting suncream on every day .

[Sksarj]

Hi Maria Sorry to hear about your 'nail' problem. I have ET and been on HU now for over 12 years. Had problems with toe nails and finger nails.

I can recommend a product I get from Boots chemist called Sally Hanson vitamin E nail and cuticle oil.

Paint it on my finger nails every night last thing and massage it in. For strength I occasionally use Sally Hanson Advanced Hard as Nails, leaving a small gap at the base of the nail to allow the oil to penetrate. Hope this helps. Regards Sue

[Kelly2]

Τhere are medicines for MF. And new ones too!

[lizzziep]

Hydroxy can cause skin and nail issues. You can try Sally Hanson nail strengthener, my nails were never particularly good so I have them silk wrapped and painted every 4 weeks.

I am on Momelotinib and hydroxy.

[JHigelin]

HiI have been on HU for 10 years and my nails have gone soft and brittle for the past year and an half. One is splitting down in the middle and getting caught in everything as soon as it grows a bit. Very annoying. I've tried various nail cream but nothing has worked. I'm just cutting them as short as possible for now but will be trying the cream mentioned in another thread.

[quanglewangle]

Brittle and cracked finger nails plus hard as nails (!) toenails with longitudinal huge ridges. I take powdered gelatine in juice every morning, daily dose of biotin, and apply 'O P I' nail strengthener. I am not sure whether any of these help but am reluctant to stop, so I just keep filing and try to grow enough nail to be able to function. The nail splitting downwards is the worst effect that I have to combat, though a big toenail has just developed an extra layer underneath - odd!.

I am two weeks into a switch from Hydroxycarbamide to Ruxolitinib so my fingers are crossed.......

[Loubprv Volunteer]

Morning Maria beautiful day!I have had pv for 17 years and was on HU for 16.

Tried peg Interferon which I didn't get on with, now on Rux - 20 mgs daily

Always had an issue with nails, I keep mine very short, no nail varnish etc

My hair was really good on HU but has lost much of its curl on Rux and is very very dry. I look as though I live in a wind tunnel 🤣

God bless drugs. However, I m thankful to feel well on the whole ( I m 71 almost) and for the excellent care I get.

Louise x

[30371madison]

misslesley, I'm currently on 1500mg of Hydroxi and guys have nails that are breaking like a tooth pick. Feel Better!!

[sinb]

I finially got tired of splitting finger nails down to the quick. I have been on HU for 4 years and frustrated with my nails and dry and splitting hair.

So now using a manicurist and doing a tips procedure which has grown out my nails, to my surprise. It is a powder coated over an epoxy not a nail polish or gel. It is pricier than standard gels but for me it is worth it. Nails are very hard but can keep the length shorter to open those blister packs. It lasts me 2 mos. then a new color to change it up! A price to pay for the PV dx.

[Looolooo]

BiAB nails is the way to go. Expensive but worth every penny. I do my mother's pill box every week and know exactly what you mean! Biab (Builder in a Bottle) stops breakage dead and protects your own nails.