Alopecia World
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Fingernails
Hello all,
I am brand new to this site and wondered if anyone had any ideas on taking care of fingernails that are involved with Alopecia Universalis. Over 65, looking younger as a result, sleek I am told, and I guess comfortable with looks, but wondering about the long term stuff.
I am brand new to this site and wondered if anyone had any ideas on taking care of fingernails that are involved with Alopecia Universalis. Over 65, looking younger as a result, sleek I am told, and I guess comfortable with looks, but wondering about the long term stuff.
Replies to This Discussion
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Permalink Reply by Tuesday on
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Dan - I'm eager to hear some good solutions. I also have AU and my nails are a mess - thin, ridged, cracked, peeling and nail beds exposed. As a woman, I'm particularly embarrassed by the state of nails and my hands. I find almost every commercial product out there burns (i.e. stings!) my nails and/or doesn't do a thing.
My DH bought me a jar of pure unscented organic shea butter and it soothes and softens my nails - first time I've actually found something that works. Doesn't fix the issue but it makes them temporarily feel better.
This is the product ... http://www.kariderm.com/produits/produits_1419_en/ It also helps my psoriasis - again - the only product I've ever found that doesn't sting and actually improves appearance.
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Permalink Reply by Rachel on
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I have AU as well, and have had it for nearly 25 years. When I was younger my nails were very thin and peeled quite badly. Over the years my nails have become much stronger. The only problem I currently have is deep ridges in the nails.
I have always made sure to moisturize (I like curel) and keep some type of polish or strengthener on them.
Good Luck =)
Rachel
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Permalink Reply by Dan Caster on
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Dear all,
Thanks so much for responding to my wondering. It is indeed a comfort to know that you all have been there and appreciate the situation. My promise and pledge to all is that should I find a solution as we keep hunting, we will pass along. Gordon, you give me hope that this might clear up at least a bit.
At this point, we will keep on attending the nail place, where there is a lovely sensitive lady that fills over my badly pitted nails with a bit of acrylic at least keeping them from hemoraging through the pits. Not sure if this is the best, however having yellowed nails that at least are hard, protecting the nail bed is to me much better than worrying about whether I will have open sores on my nails that are totally unacceptable in my hospital business.
The almost total lack of information from dermatologists and the physicians I have visited is the most frustrating. Most of those related to Dermatology are only interested in looking at skin and removing moles as that is where they make their living. It appears that medicine has gone the way of a lot of businesses (utilizing the Pareto principle 80/20) in that today's way is to take what you know best and eliminate thought and action about everything else. Though we all are a small percentage of the population, one would expect that there would be someone somewhere studying at least a part of the disease and the causes and effects.
We WILL indeed find some answers and share them with you wonderful people
Thanks from the bottom of my heart for your kind responses.
Dan
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Permalink Reply by BaldGirlsDoLunch.org on
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"...one would expect that there would be someone somewhere studying at least a part of the disease and the causes and effects"
Teams of researchers (US, Israel, India, Australia and others) primarily in the fields of genetics and molecular hair biology are attempting to create greater knowledge of hair growth and loss.
Human physiology is complex. And while many find if frustrating that a disease we know personally has no reliably good treatments for everyone and no cures, that's just the way it is.
It is only very recently in the duration of humans being on the earth that people even lived beyond early middle age. Most women died in childbirth. Most children died of diseases we now can vaccinate against. Penicillin came on the scene not that long ago in the whole scheme of human existence. While folks today are impatient with the lack of cures, I find that course normal. And that is why my mantra is to encourage people to "look in other directions" when making their life whole and their life complete.
Research is a long slow slog and no autoimmune diseases have cures though many are managed ok with medications. Nearly all research ends in dead ends and that's true, too, about medications used for psoriasis that have been used in trials for alopecia. None have panned out. That's ok. It's the nature of research. Have a theory. Test it out. Have no expectations. See what happens.
Take the big and long view and be realistic. Being frustrated with physicians for not knowing the unknowable is unreasonable. Blaming physicians is misplaced disappointment.
Thea
baldgirlsdolunch.org
Follow my blog at baldgirlsdolunch.org where I post the results of alopecia research.
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Dear all,
First of all, thanks for all of your replies last year. We have moved on, accepted what's going on and despite no knowledge base, have begun to develop our own, trying strange stuff and need to share if anyone is interested.
The pitting continues, both on the hands as well as the feet, the overlays were ok for the first few months, but keeping up with the add ons was not only expensive, but the buildout on the ends of the nails resembled a fortress at times, making the ends of the nails quite difficult to deal with, easily breakable and still incapable of picking up stuff from the floor, or believe it or not, opening the charging door on my cell phone.
We attempted ordinary nail polish (not easy for a male) which didn't do much, and then due to the cost of the stuff, (Ladies, I am beginning to empathize with what you spend on beauty supplies), I couldn't believe how much just clear nail polish cost. Finally happened upon some neat stuff at Walgreens, I think it's a private label for them, Sally Hansen Advanced Hard As Nails for about $3 a bottle and WOW! what a difference.
Almost immediately my nails started to improve. The stuff filled in the pitts, and made my nails look almost look normal, though at a trade show, one of our customers asked me if I used glitter nail polish, in the words of Wayne's World (NOT!). Under the lights, I guess it looked pretty shiny. Still have the thickness from the plastic nails after a year, though it's growing out. Using an extremely coarse nail file given to me by the nail shop, it is dark grey and about like coarse sandpaper on a nail file, to remove and shape the nail, and a thin metal (airlines wont let you carry one of these onboard, and I travel so use is limited to the house) file for the soft underpinning part of the nail which needs to be removed otherwise I feel like the nail is stuck to my finger.
While "normal" is a long way off, this is tolerable, many of you suffer more than yours truly, and this is hardly suffering, just a small amount of frustration. The Manhattan's at dinnertime help Hope that we can count at least one person that this would help, as you all were great when I first discovered this.
Have discovered some newfound youth as well as my customers think that I have become younger, "look sleek", and one suggested I could become the model for the "now aging" Ken doll. I am the new 45, and bought an AB cruncher so that we could do the abs and buns of steel. It will take a lot longer to work on the abs part than it did with the nails.
Stay hopeful, the latin is "Illegitimus non carborundum" write me back channel for the translation. dsrtfx@sbcglobal.net
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Permalink Reply by Connie - Chris' Mom on
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My son lost all of his fingernail and toenails within a few months of developing AU - they turned yellowish and then just started shedding. The dermatologist suggested Biotin, 2500 mcg daily. It wasn't until his other doctor upped the dosage to 5000mcg and added a B-complex that we saw dramatic results. He now has all of his nails back and they appear to be nearly as strong as before AU. He's also had some re-growth of his hair, not much, but hopefully it's just a start.
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Wow I never connected my bad nails to AA . I also have hypothyriodism and Vitaloga so with all that going on I didn't put it together could all this be due malabsorption of calcuim and vitiman D???? I've also had bad teeth my whole life I was in the dentist chair at 2 yr old! Didn't our mom always tell us to drink our milk for strong nails? Just a thought. I also just found out my older sister has breast cancer man I'd like to throw some of this stuff back to where ever it came from!!!
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I'm still working on my nails. I'll report back the results. I'm taking classical guitar lessons and eager to have a bit of growth on my right hand. Seems one has to work extra extra hard to fix alopecia-stricken nails. I'm rubbing olive oil or shea butter on nails at every turn (about 15 times a day) and applying Witchcraft hardener. I ordered some Onymyrrhe and some hoof strengthener creme - I'll see if that helps. Fall/winter are the worst time for my nail issues. So if I can weather this impending season and grow some lenghth - that will be a huge thing.
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Permalink Reply by Lisa Crowner on
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Hi Dan-
Great question......one I have struggled with for over 20 years with AU. Now I keep a nail strenthener on my nails all the time-definately helps and I just started taking some daily vitamins. The vitamins really seem to be making them much stronger. I too have had the deep ridges in my nail bed but those eventually grew out. Now I just have the stippling and the very soft, peeling nails. If I keep them covered though-it makes a work of differrence.
:-)
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