Regular nail care is essential for those with PC.
Patients use a variety of methods and tools. Watch the Caring for PC – Nails video for suggestions.
CARING FOR NAILS
Trimming nails regularly — not too close or leaving nails too long — is the best practice for PC Nails.
PC does not cause infections. However, it is possible for those with PC to get a secondary fungal infection (such as a nail infection or athlete’s foot, etc.). An infection is caused by germs from the outside, not from something internally. Children with fragile nails are more susceptible to infection because they don’t have the same barriers as others, but the infection is not caused by PC. However, infections do happen because it is often easier for germs to get through PC skin and nails. Infections are more common in children than in adults because children are more exposed to germs (through putting their hands everywhere, not washing well, etc.).
An anti-fungal treatment will not improve the PC condition; however, it may work well to treat a secondary infection. Most of the drugs are not designed for long term use; they are designed only to treat an infection.
Preventing Infections
“Daikins Solution can be used; however, just as effective and less expensive is to put 1 capful of bleach (unscented, plain household bleach) into 1 gallon of water then soak. This kills yeast, which causes fungus and viruses. It is powerful. Use a fresh batch each time, as it loses potency if stored. Rinse after using. Apply Vaseline while still wet.
Question: What about vinegar instead of bleach?
Answer: It kills yeast, but it stings.
Question: What about peroxide?
Answer: Not as effective, plus it causes tissue damage.
Question: What about witch hazel?
Answer: Okay, but it has lots of alcohol and it dries the skin.
Question: Instead of using Vaseline, what about A&D or Aquaphor?
Answer: Okay, but more expensive and likely not really more effective”
Antimicrobial Bleach Bath
by Dr. Leonard Milstone, 2002
Aim for a 0.05% solution of hypochlorite. Laundry bleach contains 5% hypochlorite.
Use 1 ounce bleach in a gallon of water to give 0.04%. (2 tablespoons) Or put 30 ounces (about 4 cups) of bleach in the average 30 gallon tub. If you only fill the tub half full of water, use two cups of bleach.
If this concentration is irritating, it can be reduced to 0.01%.
Soaking should be for at least 30 minutes, 1-2 times per week.
NAIL INFECTIONS
Swollen Nails in PC Babies – we call these infections, but most physicians say this is not an infection. Whatever the right term, many babies and children with PC have this problem at times. If you have a relationship with a pediatrician, physician or podiatrist who understands PC, that is always of great value. This is not intended to contradict medical advice in any way. The nail must be ready before the following steps can be taken.
Actions many PCers take when the Nail is “Ripe”
From one of our PC patients (a mom with PC who has two boys with PC) may be helpful. This is not medical advice, but experience advice.
“I looked at the picture and the nails look very familiar. Both my boys often got infected nails as little babies and they looked a lot like these nails. The nail on the left looks “ripe” right now. Both nails may be ready to have the pus released. I would be as gentle as possible and try to do one of two things (or both, depending on which thing works best):
- Use clean (sterile), sharp, large nail clippers and see if I could make a hole in the nail. Probably start on the side, on the end near the tip. Do it when the baby is sleeping if possible. There will be pressure when the nail is first clipped and that can be very painful. So the softer the nail, the better and if baby is asleep, that’s good too.
- Use a sharp, clean (sterile) razor blade (I like a double-edged razor blade because it bends) and try to nick at the nail to make an opening, again from the side and end of nail nearest the finger tip. If nothing comes out, try near other areas. This may be a better way than the nail clippers.
- Whether a nail clipper or a razor blade is used, go slowly and gently and not too deep at first. The outer nail is “dead” but soon, inside the nail, there will be “live” nerve endings so be careful.
- Before trimming, if the nail doesn’t seem soft, soaking it first by putting the baby’s hand in warm water (not hot) for a few minutes will help. Also, after the nail is cut into and the pus comes out, soaking the nail again, or even running it under warm water will help.
The nail itself may fall off at some point once the nail starts to heal. Antibiotics may help the healing, but to heal quickly and to relieve the pain as soon as possible, getting the pus out is important and the pain relief will be almost immediate. Based on my experience, there will be pus in the nail, not clear liquid.
Also, baby pain reliever like baby ibuprofen will help as well. If I had to, I would give the baby some of that before trimming the nail. However, the greatest pain relief will come when that nail is gently cut into and the pus is released.”
NOTE: A topical antibiotic cream can be used after releasing fluid/pus (the same as for blister care.) Oral antibiotics may or may not be needed. If there are red streaks, it is important to immediately see a physician for antibiotics. Other times nails can be treated and healed without antibiotics. You will learn to be able to know at what stage the problem is and when to see a doctor. If at any time you are uncertain, see a doctor.
Suggestions from other PCers
K6a patient: “When my nails are infected, they are red, swollen, and filled with pus. The nail pulsates and is extremely painful. I trim when I feel the twinge of infected nail. With children, you won’t know until it’s too late. Sometimes, you can trim and avoid the swollen nail. Many times, you must wait until the nail “ripens.” Then, soak for a long time in very warm water until the nail is very soft. A gentle slice with a sharp razor blade may be enough to draw out the pus. Sometimes, an especially thick nail will need the help of large nail clippers, but pressure is involved with those, so if you can get the pus through the nail with a razor blade, the pain is less severe. Once pus comes out, soak again — we like the bubbly Hydrogen Peroxide. Then, add an antibiotic ointment. If the infection is too bad, it will — on occasion — need a prescription antibiotic. It is a great relief when the pus comes out. Sometimes, it’s not enough and, on occasion, red lines have gone up the finger. In that case, an immediate trip to the doctor for an antibiotic is necessary.”
K6a patient: “If the nail area starts to get red, soak it in warm, salty water or warm solution of Epsom Salts as often as possible. Sometimes, prolonged soaking softens nails so holes form spontaneously — this is the best outcome. Soaking also relieves symptoms without needing antibiotics or lancing.”
K6a patient: “Swimming, for us, often results in nail infections.”
K6a patient: “We put Sally Hansen’s Hard as Nails (a clear polish) on nails after sanding them. We think it makes the nail more durable and less prone to infection.”
K6a patient: “Infected nails are very painful. We can feel our heartbeats in our finger and it’s very hot. We wait for the nail to mature (take analgesic syrup to calm the pain), and once the pus is assembled, bore with a needle and disinfect. It is a great relief when the pus comes out.”
K6a patient: “I found out from one of my relatives that she was taking a strong medicine (very expensive as well) recommended by a dermatologist she met. She has been taking this medicine daily for the past 4-5 months, I think, and the interesting thing is that her thickened nails are healing pretty well. I went to see her and I saw that her thumbnail was almost leveled to the skin. According to her, this same nail was really thick before she starting taking this medicine. The medicine’s name is Seritral.”
- Comment 1 (PC Physician Panel member; Dermatologist): “Seritral is an oral anti-fungal agent and the excipient is just the inert material that holds the pill together. The name of the anti-fungal is itraconazole and it does work well as an anti-fungal, but patients using this medicine should be monitored for possible liver toxicities, especially if they receive it for a longer period of time or at a high dose. The anti-fungal will rid the feet of the fungus, and if there was a fungal infection going on there, it may improve the condition by reducing the “trauma” to the feet, but will not get rid of the problem altogether because it doesn’t change the genetic features of the skin. It is also remotely possible that there may be a second effect of the drug, in addition to the anti-fungal effects, that could help to improve the condition (but not cure it), but this has never been studied and so I would be very hesitant to draw that conclusion.”
See also Medications & Topicals for Lamisil and Tea tree.
PATIENT TIPS & COMMENTS FOR NAILS
NAIL CARE FOR CHILDREN
K6a patient: “Trim a baby’s nails when it is asleep or relaxed. Use the sharpest pair of nail clippers you can find, and don’t take off too much at a time. Then, file the nail smooth in one direction only. Filing back and forth seems to make it sore. The more we messed with the nail, the more likely we were to have problems. Groom their nails about every 2 weeks. The nails are more noticeable when they’re longer, but it’s the balance between “short enough” and “not too often.” Then, apply a nail polish top coat or nail hardener.”
K6a patient: “I trim regularly using large nail clippers. You should trim PC children’s nails every few weeks using large nail clippers and razor blades. Soak the nails in water first. This seems to ward off infectious nails. You can sometimes feel a twinge in your nail to warn of an oncoming infection. Trimming immediately can avoid the problem altogether. I never get infected nails as an adult, but my young children still do.”
K16 patient: “Wait until she is fast asleep — that is the only way I’ve been able to do my daughter’s feet, and that is how my mother did mine. I have about 45 minutes to do it before her sleep gets lighter and it gets impossible, and the feet are dry by then, but at least she’s still for a moment. Maybe you could try it, too. Hope you find a way that works!”
ARTIFICIAL NAILS
K17 patient: “I have really bad nails, but manage to disguise them by filing them flat and putting false nails on.”
K17 patient: “I always wear false fingernails. The big toe nails on both my feet are also false. You can still see the thickness from the side, even with tips.”
??? patient: “My sister and I have been filing down our nails since we were pre-teens. I have applied artificial nails on my own since I was about 18. We both have had acrylic nails put on professionally (when they first came out) but they didn’t work out…. it took too long, was embarrassing, and cost too much. So, I just watched what the manicurist did and I knew I could do it myself. To make a long story short, I am now 46 and I am still wearing artificial nails which I redo religiously once a week. My sister, who isn’t as vain as I am, doesn’t wear them anymore because they won’t stay on with the type of nails she has.
Even though mine don’t look perfect, they do fool most people! Now that they have come out with artificial toenails I also apply a fake one on my big toes and it feels great to wear sandals! Of course there are a couple of down sides to wearing false nails, but I think it’s worth it and it has made me feel more secure throughout my life.”
??? patient: “I manage the condition by using a dremel tool and thinning them out, and also by going to a nail salon to have gel tips put on them. It took awhile to find a good nail tech who has a good attitude and is very patient with my condition. I usually get gel nails and they last several weeks and then I have to remove them. Sometimes, if I am too ruff with my nails or accidentally smash them while the artificial nails are on, they will get an infection so that’s another thing I have to manage. Infections are very painful and require me to use the dremel tool to take off as much of the fake nail as possible and sticking a needle into the nail bed until the puss oozes out. It is a pain I have learned to deal with because when I was younger I would have a few nails at one time infected and they would throb to the point where I felt it would be better if I could just cut my fingers off. After the puss is released, the nails kind of shed their own dead shell and a new nail grows. My feet are affected by PC as well, and I have to dremel them too. If I don’t get enough sleep, the planters warts will hurt and I will have to dig at them. Not having enough sleep ruins my day because everything on my feet aches — the calluses and everything. In the past when I have painted my nails after making them shorter and filing them down, it’s as though the nail soaks in the nail polish and it starts to hurt and feel horrible. It is so hard to remove nail polish from PC nails because the nails soak it up like they are a sponge.”
NAIL REMOVAL
NOTE: If nail removal is not done properly, they will grow back. We have had mixed reports for nail removal.
The following article reviews cases of nail removal from the IPCRR. CMC DeKlotz, ME Schwartz, LM Milstone. Nail removal in pachyonychia congenita: Patient-reported survey outcomes. J Am Acad Dermatol.76(5).990-992.
K16 patient: “I had my toenails removed. With the first surgery, all the toenails grew back exactly the same. It has taken 4 attempts to permanently remove the nails, and each time I had it done, a few less nails would grow back. Now I am left with pain free toes and the nail bed has been replaced with regular old hard skin which is much easier to shave off. I still have 2 very stubborn nails left now (4th toe on each foot) which seem to refuse to stop growing. The removal of the toenails is not too bad with some strong pain relief immediately after the surgery. The pain seems to go within hours.”
K6a patient: “My nails are removed so they are a soft, kind of a callus layer. I use an emory board and file them smooth. Then, to keep from splitting or from skin splitting, I use a nail hardener. Days later I use Vaseline.”
K6a patient: “My doctor shaved the nail bed on my big toes to see if it would make them grow flat. It actually made toe nails worse — quite lumpy. It was a painful operation.”
K6a Patient: “My big toenails are always swelling and falling off, causing a lot of pain. I had both the big toes on my feet removed. The procedure was not that big a deal. I spent one night in the hospital with a bit of pain (mind you I was on a bunch of pain killers) but not much worse then when they would swell and fall off. For some reason, none of my other toenails ever gave me trouble. The procedure didn’t work — my nails grew back. However, the two big toe nails don’t swell as often. I don’t know if it’s a coincidence, but since the procedure (at least 10 years ago) they have only fallen off 3 or 4 times.”
