Nail loss with Raynauds

[Coldgirl]

Hi, I have Raynaud's and suffer with chilblains, mainly on my fingers. They lead to swollen, itchy, 'sausage' fingers which lasts for a few days. In the past my fingers would return to normal between attacks but this year I've suffered from a number of fingernail infections, losing 3 nails over the last year, and I wondered if it's linked to the poor blood supply to my fingertips.

The infections start with an area of red swelling close to the cuticle (although the cuticle is unbroken) and develop into an area of pus which moves from the skin behind the cuticle into the nail bed itself. The infection seems to get in between the layers of the nail itself and the top of the nail gradually detaches leaving a very soft, wrinkly and thin layer of nail behind. It then takes a number of months for the nail to regrow fully (I know this is always a slow process). I've tried antifungal lacquer and had multiple courses of antibiotics but I really don't want to keep taking antibiotics if I can help it. I just wondered if anyone else had experienced this or had any advice? Thanks!

FYI Even my healthy nails aren't that good, in a number of them the white area is increasing in size as the nail appears to be detaching from the bed although there is no evidence of infection.

I generally manage my Raynaud's by keeping warm, wearing gloves, using handwarmers, avoiding fluctuations in temp etc. I did try Nifedipine for the first time this year as my symptoms were getting me down. I took 10mg, 3 x day for about 3 months, but I saw no improvement and therefore the GP agreed that I should stop taking it.

[creditcrunchie]

Hi. Sounds like you are having a rough time....I can only quote my own experience to see if it might help. I had problems with my right foot as toes ulcerated and were as you would expect painful. Initially I started on same dosage of nifedipine but I had side effects so settled for a slow release once a day. Then rheumatologist sent me to hospital day ward to have an infusion of illoprost which I did for a number of years and it helped. However then I was offered a trial on sildenafil aka via viagra and this really suited me so now I have my slow release nifedipine plus the sildenafil. I always know when my second silendafil is due as my foot with the poor circulation and prone to ulceration starts to become very painful but the tablet eases it to normal. I certainly would ask about the infusion (mine was daily for 6 hours) to help you heal then try mix and match to try and find an answer. Mine isn’t perfect but it heads in that direct. Take care and hope this helps.

[Coldgirl in reply to creditcrunchie]

Thank you, that's good advice. I think you are right that I need to find a balance of treatments which will work for me. I've delayed following up with the GP as they have more than enough to worry about at the moment but I suspect that I should see them again after the hols and push for a referral. I also get swelling and aching in my legs starting from the time I get up each day and I suspect all of my symptoms are linked. A specialist may be able to look at the bigger picture rather than only treating the infections/swelling with antibiotics/compression stockings.I'm sorry you suffer with your toes so much, I can imagine the ulcers are extremely painful. Take care and thanks again for taking the time to help.

[Dizzy64]

Hi, I'm so sorry to read your having such a rough time. I take Nifedipine and if they haven't got any I get the slow release form, which I prefer.I have never had any problems with my nails I am wondering if fingerless gloves which I wear at home would help, and soaking your nails in warm salt water or diluted teatree oil and instead of drying your hands with a towel use a hair dryer as your not pulling on your nails and towels can cause your weak nails to pull away from the bed. As I use a hair dryer to dry my toes as I have a chronic spinal condition so bending is difficult and want to make sure my toes are properly dry.

I hope some of this advice helps.

[Coldgirl in reply to Dizzy64]

Thank you for the advice. I hadn't considered using a hair dryer but it makes sense. I'll definitely give it a go. I can feel my fingers start to tingle when the temp in the house drops so I try to keep the house warm and always wear lots of layers. I have been treating the infections with salt water soaks and applying tea tree oil before bed - great minds think alike!Take care and thanks again for taking the time to help, I really appreciate it.

[Dizzy64 in reply to Coldgirl]

You're very welcome if I can offer advice that would be of help, then it's not a problem. Another thing I was thinking of is have you tried any vitamins for hair, skin and nails that will strengthen them?I also layer up as I feel the cold, and. never used to. But love my thermals especially as you can buy polo neck jumpers in different colours and I wear ski gloves when I go out.

Hope you start to feel better soon.

[Coldgirl in reply to Dizzy64]

Thanks. Yes, I do take hair and nail vits and I love my thermals too!!

[Kakey]

Yes, I have also the exact problem. Mine has been ongoing, but intermittent, for a few years. Only 2 fingers were involved for most of that time, but now a third. I'm sorry, but I don't have any good advice, I wish I had x

[Coldgirl in reply to Kakey]

Oh, so sorry to hear you have the same problem. Hopefully some of the advice kindly offered on this thread may help you too.

[Jmrose]

I have had the same exact problem in the past with six fingers and bandages on both hands. In addition to the nifedipine my doctor also prescribed Nitro Bid Cream which is a nitroglycerin cream that I put on my fingers were rings would go and that helps to open up the blood vessels and allow blood flow to the fingers an aid in the healing. I use it on an as needed basis when I start to get the red swollen sausage fingers and the burning feeling in the fingers. I hope this helps

[Coldgirl in reply to Jmrose]

Thanks so much. I'm sorry you have the same issue. I'll look into the Nitro Bid cream as that may be very helpful, thanks!

[magria]

Hi Coldgirl,

I have only just come across your message.

It's three years since your post, but since I have been experiencing the same problems for the last three years, I am wondering how you are and if some of the remedies so kindly reccommended worked for you. It would be great to know.

Many thanks.

[Coldgirl in reply to magria]

Hi Magria,

I'm so sorry you are experiencing the same problems. To be honest nothing seems to have helped my nail loss too any great extent, it continues to occur and I continue to manage it in the same way although I'm no longer bothering with the antibiotics and tend to let it run it's course. It seems that once the process has started the nail is going to be lost anyway.

I am also now experiencing what I think might be digital ulcers which start as a white dot below the skin (it almost looks like a spot of puss although I don't think it is), then the skin breaks open, the open, weeping area increases in size before gradually healing a couple of weeks later. I'm so fed up with the state of my hands that I pushed the GP and have now started taking Losartan daily as an alternative to the Nifedipine which didn't seem to work and also caused my BP to drop too low. I've been taking 25mg Losartan daily for 4 weeks and so far the only side effect is headaches although my hands haven't improved so I'm going to increase to 50mg daily which is what the GP advised. Hopefully this is going to improve blood flow to my hands but with the warmer months on the horizon it may be hard to tell if any improvement is due to the meds or an increase in the overall temps.

I'm sorry to ramble on about my hands again and I'm really sorry I can't be of any more help with your nail loss😞I hope you are able to get through it and that it doesn't cause you too much distress - I know what you are going through!

[magria in reply to Coldgirl]

Thank you so much for replying and so quickly.

I am sad to learn that you are still suffering in the same way.

But it is a comfort to know that I am not alone with this problem which nobody, even the GPs, seem to understand.

I too could not get on with the various meds which are supposed to help, Paticularly those which made my legs swell or messed with my head.

So, just trying to remain possitive - and hoping my poor, painfull, unsightly hands are not noticed too much!

AND Spring IS on it's way - and the warmth and sunshine will ,hopefully, bring some relief for us both

Thank you again.

With all best wishes.

[Coldgirl in reply to magria]

Oh, so sorry to hear that the meds were no good. Yes, roll on spring and a bit of relief for us both,🤞

[Coldgirl in reply to magria]

Just another bit of advice which I do follow and which may help is to use a heavy duty emollient and cotton gloves overnight, to switch to a non soap hand wash and avoid harsh chemicals and washing up liquid. I got the emollient and hand wash from the GP and I am particularly strict in avoiding washing up liquid as it's a great excuse to get out of the washing up 😁

[magria in reply to Coldgirl]

Many thanks. So kind of you . I use the cotton gloves with a manuka honey handcream at night but will deffinitely ask my GP if she/he can prescribe the emollient which might be more effective. I, also , find even the eco, sensitive wash up a no no but now always wear latex free gloves for wet stuff. In fact , I have a wardrobe of different gloves - vynl, silver, arthritis, outdoor research, sking, sheepskin, etc. ! Thinking of getting some really pretty and funky ones to diguise my hands on the, rare, occasions I go to 'a do' !!! Keep warm, stay well. Best wishes.

[Coldgirl in reply to magria]

I know exactly what you mean about the glove collection 🙂 A funky 'occasion' pair sound like a great idea. No reason why they can't be part of an outfit - I remember wearing fingerless lace gloves as a teenager 😁Down mitts are my go-to as I can pull my fingers into my palms for warmth if you know what I mean but they're tricky if you need to do anything - hubby calls them my flipper hands 😁The only gloves I have yet to try are the silver thread - do you find them any good? Just FYI the handwash from the GP is Dermol 500 lotion and the emollient is Hydromol ointment (I find it too thick to use in the daytime but works well with gloves overnight). Take care and stay cosy x

[magria in reply to Coldgirl]

Thank you ,once more, for the information. The silver gloves are comforting to wear - they feel snug and warm when put on. They do not, however, allow much dexterity. Like all the gloves I have, they do not prevent my hands becoming inexplicably cold after a while, even with vigorous exercise. All best wishes,

[Coldgirl in reply to magria]

Thank you, I'll keep an eye out for the silver gloves - you can never have too much variety when it comes to gloves! Take care x