Toe nails: Hi all, I have scleroderma... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Toe nails

77lindy profile image
18 Replies

Hi all, I have scleroderma and raynauds and I am losing my toe nails. This has only just starting to happen. At this present time i am listing 3 Has anyone experienced this ?

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77lindy profile image
77lindy
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18 Replies
Maryjcl profile image
Maryjcl

Hi Lindy, I am in the process of loosing my first nail on my little toe also knew another lady that this happened to so must be part of the disease, just something else to look forward to. Take care x

marilynmcl profile image
marilynmcl in reply to Maryjcl

Hi, whilst not 'losing' my fingernails or toe nails...as yet.. mine are splitting vertically past the quick so I have had to trim them back that far and beyond as they 'catch' on things and this is very painful...so am just about down to the cuticles on a couple of them....also, they are ridged vertically too....toe nails have changed shape and are bowing instead of being slightly rounded as usual...very annoying when trying to trim them.

marilynmcl profile image
marilynmcl in reply to marilynmcl

forgot to say...went to a manicurist to see if she could help and she did try to use strengtheners on them and it cost me a wee fortune for a few sessions but they just keep on splitting so I gave up with losing money on trying to stop it happening.

Maryjcl profile image
Maryjcl in reply to marilynmcl

Hi Marilyn, my fingernails have the ridges on and have changed shape also the skin on the tips splits and is so sore, take care

marilynmcl profile image
marilynmcl in reply to Maryjcl

Mine did that too...but the fingers also turned from purple to almost black...so I ended up in hospital with a drip to open up the blood vessels to my finger tips before gangrene set it...Raynauds caused it...so....just be careful if they start to change colour..my middle and ring finger were worse affected and they split too.

Maryjcl profile image
Maryjcl in reply to marilynmcl

Aw that sounds bad Marilyn, thanks for the heads up I will keep my eye on them x

AtlantaJana profile image
AtlantaJana in reply to marilynmcl

Marylandmd, I had no idea there was a treatment! My fingers just look and feel horrible at times. Each finger on my left hand turns from deepest purple to red, to deep blue and then blanched white. I took pictures and showed them to my pulmonary specialist who shook her head and said "yep, typical Raynaud's." That was it! I am worried about the loss of sensation in my feel because I am thinking it could eventually cause gangrene from lack of circulation. Do you have answers as to whom I should go to for treatment and what treatments have been successful?

marilynmcl profile image
marilynmcl in reply to AtlantaJana

Just read your post....I went to doctor about my fingers splitting at the top and turning almost black and discolouring on the other fingers...middle finger was the worst....and he sent me to hospital straight away, once there, I was put onto a drip for 3 days...as explained in previous post...so if you have any concerns just get to your doctor right away. Good luck and sorry it took so long to find your posting.

Patatie50 profile image
Patatie50 in reply to marilynmcl

That has happened to me. I thought it was maybe a fungal infection although my nails do not exhibit any of the discoloration that people say they experience. Maybe it is my Raynaud's. I WAS tested for Scolerederma many years ago when I had problems with bleeding fingers and toes, swelling of hands, feet,face and abdomen, but it was ruled out. I am beginning to wonder. What are the symptoms of the disease? When the trouble started, I took off toenail back to the place where it was still attached. Then, thinking it was a fungal thing, I applied a product I found at the pharmacy. I can't remember the name... it might be Noxon or something similar to that. No fun going without toenails in the summer! Fingernails have ridges but I apply a variety of nail products to them, sometimes wrap them after applying creams and wear mittens to bed which helps somewhat. Good luck.

linda-l profile image
linda-l in reply to marilynmcl

Not sure if I'm breaking rules, but Nailtiques help ENORMOUSLY with nail problems ... plus taking kefir daily!!

leannehowis profile image
leannehowis in reply to marilynmcl

Me too!

1pit-boxer profile image
1pit-boxer in reply to leannehowis

I take the supplements for hair, nails and skin. I have nice hard nails relatively speaking. Costco has a good price on them. Kroger has a big sale if the gummies supplements start sticking together. $5.

I have sjogrens. Had Positive Testing with biopsy in NIH research study. I think I have some raynards too. But NP did not seem to have an indication of that on labs. My fingers seem to turn red and yellow then purpleish when I squezeed s hand fist. My nails are straight. Which makes them prone to getting in the way and being damaged as opposed to hugging the finger tips.oh well I'm glad I have a least afew beautiful nails to look at some times. I had always been a nail biter. I think it might have been because my nails were so soft .

77lindy profile image
77lindy

Thank you ladies. I really didn't know what to think, seems it's quite normal for scleroderma . Keep well ladies x

beaglab profile image
beaglab

I think that everyone who has Raynaud's will benefit from taking Niacin, 500 milligrams, Twin Labs brand or other quality Niacin. It is available at the Vitamin Shoppe in the US. I take it three times daily, after breakfast, dinner and bedtime. It takes a while to get used to it, but keep a steady flow of niacin in your body to maintain circulation to fingers and toes. You will a warm flush as it opens up your blood vessels. Please read "Niacin, the Real Story" as it provides well researched information on dosage and safety. It has healed my finger ulcer. Even though I lost my fingernail, I am healing. Over time it will help your toenails. I put vitamin e oil on my fingernails and toenails.

1pit-boxer profile image
1pit-boxer in reply to beaglab

I forgot to say it's the Biotin that makes the difference in the nail,hair and skin. My hair has filled in quite a bit. And I notice a difference when I stop taking the "hair. Nail &skin" supplements. Really unbelievable! I think.

Thelma profile image
Thelma

I too have Scleroderma and Raynauds and lost my toe nails over 5 years ago; sometimes I wear fake toenails. Have lost 3 fingernails and 2 have grown back. My nail texture has changed on all of my finger nails, more ridges. A clear Base Coat of clear polish helps some.

Does anyone here have splinter haemorrhages at all? I get them coming and going and was diagnosed with Raynaud's secondary to Sjögren's - but now not so sure as nailfold test was normal (a few splinter haemorrhages at top of the nail but no comment about these). I also get this dark bruised look at the base of my nails.

My nail beds are very tender at the tips but showed a GP yeeteday and he said he didn't think it was chilblains and definitely not fungal - my big toenail has a very persistent vertical red line showing and a large parallel splinter haemorrhage. They just look dry thoughwjth this bruised sheen. He suggested I show the rheum doctor who specialises I Scleroderma but I don't want to make a fuss in between appointments. My nails don't lift away from the bed at all - but have become thick and covered in sheen. My feet and hands are constantly freezing and numb but he tells me this is neuropathy. I'm not sure that this would cause splinter haemorrhages though? And it's getting painful to wear shoes now because the tips touch the tender part of my toenail where this haemorrhage is. Hey ho thermal socks and gloves in September?!

AtlantaJana profile image
AtlantaJana

Hello, 77lindy! I found your post very interesting because I too have Raynaud's and lately my nails are splitting peeling in layers, and my cuticles are coming away from the nail bed. I have not, until now, associated it with my Raynaud's. Additionally, I have unexplained peeling on my hands and even my face. Have you found a solution that really works?

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