Care, Medications, Topicals, & Treatments

One of the challenges with PC is its veritable nature and each person is unique. Please remember just because something works for one PCer it may not work for another. You will have to find out what works best for you. Please discuss any care tips or treatments with your local doctor. This is not to substitute medical advice from your local doctor.

Oral Medications

Patients have discussed the need for more effective pain medication. Many regularly use various painkillers available…

Other Medications & Procedures

Below is a list of other medications and procedures that PCers have tried. Botulinum Toxin and…

Topical Medications

PCers try a variety of different topical products to help the symptoms that come from PC.…

Below is a list of other medications and procedures that PCers have tried.

Botulinum Toxin and PC

(Botox, Dysport)

COMMENTS: “No one fully understands why Botulinum toxin works for PC at all. It helps people with hyperhydrosis (too much sweat), and so the thought is that it reduces the sweat and may, therefore, reduce the blistering. It doesn’t affect what is really going on with the keratin genes. There is no information on the amount of the drug needed for PC injections versus that used for cosmetic (wrinkles) or other treatments. As far as we know, there is no published information on how the drug is stored or retained in the body following treatment for PC. There are studies for other uses of the drug.”

COST: In Sweden, you pay a yearly fee and then everything is free. In the USA, the cost estimate is over $100,000 for a single treatment because of the need to have a general anesthetic administered in a hospital.

Drug Data

Wikipedia has an excellent article on Botulinum toxin, its purpose, and other uses.

Botox — Allergan, Inc.; [1]
Also see wikipedia article on Allergan

Dysport — Ipsen ispen.com
Dysport website

US National Institutes of Health Articles:
Botox
Dysport

Best Practices

We have learned there is a specific way that works best for Botox. Including:

• It is not possible to do the injections with only cryosthesia because the pain for PCers is horrible. The injecting physician must employ nerve blocks before injecting the toxin.
• The dose should be 200 per foot.
• Other measurements will need to take place.

The following is the best treatment protocol to use for those with PC. The last author has a lot of experience working with botulinum toxin and PC. If your dermatologist would be willing to be instructed, we can connect them.

Title: A treatment protocol for botulinum toxin injections in the treatment of pachyonychia congenita-associated keratoderma.
Journal: Br J Dermatol Authors: Koren A, Sprecher E, Reider E, Artzi O

Abstract:

BACKGROUND:

Severely debilitating plantar keratoderma pain is the most distressing clinical feature of pachyonychia congenita (PC). Several earlier publications reported therapeutic success with botulinum toxin (Btx) plantar injections.

OBJECTIVES:

To describe our 4-year experience during which we administered a total of 30 plantar Btx injections to five PC patients following an optimized protocol.

METHODS:

Five patients with PC (age 21-54 years) who were treated at our medical center from 4/2015 to 6/2018 were included in the study. After an ultrasound-guided nerve block performed by an anesthesiologist, the patients received plantar intradermal injections of Btx A. To ascertain the effect of the treatment, we used a dedicated quality-of-life questionnaire for PC patients (PCQoL) and asked the patients to evaluate the intensity of eight parameters pertaining to their symptoms at baseline and before every treatment session. At study closure, patients were asked to evaluate the maximal improvement in the same eight parameters throughout the study period.

RESULTS:

All patients demonstrated a decrease in PCQoL scores during the follow-up period. All patients showed a significant improvement in PCQoL after the first treatment session and at the last evaluation (P = 0.043). The best improvement scores concerned morning feet burning and long-distance walking (> 500 m). The scores were significantly lower if the intervals between Btx injections were <100 days.

CONCLUSIONS:

Btx treatment of PC-associated keratoderma following an optimized protocol leads to a major change in patients’ quality of life.

Other Patient Experiences

K6a patient: “I have had the treatments every 2-1/2 to 3 months for the past 2 years. It is not 100% (sometimes works better than other times). One time, the anesthesia didn’t work and it was terribly painful. From that time on, I was put to sleep (general anesthesia) to have the treatment because it hurts too much otherwise. My sister also has the treatments, but cannot use the general anesthesia as it makes her sick. My sister waited a little longer this last time as it is so painful to have the treatments. Our cousin has chosen not to have the treatments.

Side Effects: I cannot read fine print very well, my eye doctor thinks I am too young to have this condition and they think it could be from the Botox treatments as my sister is also having this same effect.”

K17 patient: “Here is some information, from my point of view. There are 3 people in my family who have been treated. My sister and two others have done the treatment several times. I have only done it once. It lasted for about 6 months for me, but it took about 3 weeks before I felt any difference in the feet.

I had to start the treatment with only one foot, and the second foot was treated a little more than one month later. The good thing with that was that you could actually SEE the difference: The treated foot had less blisters than the untreated foot!

The treatment was no miracle. My feet didn’t become painless, but it sure reduced the sweat (the feet got really dry…). It took a longer time before I reached the worst “pain level” after a day of work. I got less blisters and my feet produced less calluses during the time the (drug was) in the feet.

And the needles… in Sweden you get anesthetic. There are two types, either you get full anesthetic (you’re “asleep”) or you get a local one, where they block the ankles and the feet are pointed upwards. I did the last one, and I thought that was the worst part of the treatment! Next time I do the treatment I would rather have the full anesthetic, but the good thing with the ankle-anesthetic is that it is possible to walk afterwards without any problems!

(This) is a drug and it might not be the best solution for the body, but eating painkillers all of your life is not good either.”

Early Studies

Although other patients with conditions ‘like’ PC have been included in some treatments, we know of only a few patients with confirmed PC who have been treated. Five were treated in Sweden and one was treated in Ireland. In the study in Sweden, Dysport or Neurobloc (not Botox) was used. We do not know what product was used in Ireland.

PCers try a variety of different topical products to help the symptoms that come from PC.

They are either Over-the-Counter, Prescription or Other based. These are just a few products we have heard. Remember just because something works for one person doesn’t mean it will work for another.

Over-the-Counter

Americaine – Aquaphor – Bag Balm – Callex Crème – Certain Dri – Heel Balm – Lamisil – Lidocaine – Medi Heel – Neosporin – Petroleum Jelly – Phytex Paint – Topical Ibuprofen – Biatain IBU – Voltarol

Prescription

Bactroban – Dilantin – DrySol – Fluocinonide – Salicylic Acid – Urea

Other

Formula 303 – Gentian Violet – Olive Oil – Rose Hip Seed Oil – Talcum Powder – Tiger Balm – Tea Tree Oil

OTC (Over-the-Counter) Treatments

These are products that are available without a prescription.

Americaine

Americaine is a family of benzocaine-based topical pain relievers. It is a “hospital strength” pain reliever. There are two varieties of Americaine First Aid Spray and Americaine Hemorrhoidal Ointment. They contain the highest level of benzocaine pain relief allowable without a prescription.

K6a patient: “During pregnancy, my sores actually changed texture and seemed to have more exposed nerve endings and blood vessels. The pain was constant and agonizing and to even touch a sore would put me through the roof. Because I had so many holes, or open parts in my sores, the things I used helped a lot. The best thing I used was Americaine. It’s an over-the-counter hemorrhoidal ointment. I know that sounds funny since I didn’t have hemorrhoids, but it has benzocaine in it — a numbing ingredient. So I put this stuff in my open sores and basically it numbed them so I could handle the pain. I went through tubes of the stuff during my last months of pregnancy.”

Aquaphor

[Aquaphor Healing Ointment] protects dry, cracked, or irritated skin to help enhance the natural healing process and restore smooth, healthy skin.

1. Clinically proven to reduce healing time of minor wounds
2. Creates a protective barrier that seals in moisture
3. Helps heal raw, irritated skin caused by radiation treatments, facial resurfacing procedures, and atopic dermatitis
4. Soothes and helps protect extremely dry, chapped, or chafed skin and lips caused by winter weather or diabetes
5. Soothes and protects minor burns
6. Fragrance-free, preservative-free, non-irritating

K16 patient: “Aquaphor — an ointment that soften dry callouses and smothes dry skin/chapped lips for those of us on an accutane. PCers can get this at their local pharmacy or online.”

Bag Balm

Description

Developed in 1899 to soothe the irritated udders of milking cows, the substance with the mild medicinal odor has evolved into a medicine chest must-have, with as many uses as Elmer’s glue.

According to Bag Balm lore, the stuff went from barns to bedrooms when dairy farmers’ wives noticed how smooth their spouses’ fingers were after using it on cows’ udders. The wives were jealous.

For over 100 years, Bag Balm has been a fixture down on the farm. It goes on fast—and stays on! Used for over 100 years on cattle, horses, and other domestic animals. It’s loaded with lanolin!

Helps soothe cuts, scratches, skin irritations, small injuries, and rash chapping. Softens and moistens skin. It has been used for squeaky bed springs, psoriasis, dry facial skin, cracked fingers, burns, zits, diaper rash, saddle sores, sunburn, pruned trees, rifles, shell casings, bed sores, radiation burns, and more.

Patient comments

??? patient: “I use Bag Balm to help with my PC.”

Callex Creme

[CalleX Ointment] thins and softens hardened skin and exfoliates dry, cracked heels. Its patented, natural enzymes selectively exfoliate only dry, cracked, thickened, and scaly skin while its petrolatum base retains natural skin moisture.

K16 patient: “I use Callex Creme that is a mix of urea and salicylic acid.”

Certain Dri® Anti-Perspirant

Certain Dri® Anti-Perspirant Roll-On:

This doctor-recommended, non-prescription product is applied several times a week at bedtime.

According to an independent survey, a majority of dermatologists prefer the Certain Dri® formula for treating hyperhidrosis or excessive perspiration over the formula in all the other antiperspirants combined.

Certain Dri® is colorless, fragrance free, and has been categorized as safe and effective in the ongoing review of non-prescription drugs by the U.S. Food and Drug Administration.

It is applied sparingly at bedtime and will not wash off after bathing/showering. In many cases, the user will discover that it will not be necessary to apply Certain Dri® every night to control the problem.

Certain Dri® Anti-Perspirant is available with 12 percent aluminum chloride, the active ingredient used in prescription anti-perspirants. Because Certain Dri® is water-based (vs. alcohol-based like its prescription competitors), it is available without a doctor’s prescription.

Certain Dri® Solid Anti-Perspirant contains 25% aluminum sesquichlorohydrate (Anhydrous). It is the only over-the-counter antiperspirant with this ingredient, which is more effective than the aluminum zirconium formula found in over-the-counter solid antiperspirants that are labeled “clinical strength.”

Heel Balm

Description

Many patients find various creams (including products called ‘heel balm’) may help to combat dry, cracked, and thickened skin on feet and in particular around the heels which may make care and removal easier. Under the ‘heel balm’ category, there are at least 30 different brands (including Felxitol mentioned below). These products are available at many drugstores as well as online sources.

Patient comments

K6a patient: “[A heel balm I use is] made in Australia, but the company may be South African. I use it all over my feet to keep them from cracking everywhere — it also seems to make the skin less visually noticeable too. If you have bad cracks you just put the cream on, wrap them up in cling wrap overnight, and the next day they are so soft you can walk normal — then do that for a few nights and they go back smooth very quickly. You don’t even have to trim the skin down, its very soothing too so it doesn’t hurt or sting when used on open cracks. Then, after it has healed the cracks, you can trim the skin easily because its so soft.”

??? patient: “I find the Flexitol heel balm helps to soften the hard skin on the feet.”

Lamisil

Informal comments from physicians on the IPCRR Physician Panel:

Dr. Peter Hull said, “It is possible that the abnormal nails could become infected with fungi including non-dermatophytes. Lamisil would only work to get rid of dermatophyte fungi but the nail would remain abnormal if it was affected by PC.”

Dr. Philip Fleckman said, “Terbinafine (Lamisil) is a good drug for dermatophyte infections (but not Candida or other yeast infections) of the skin. Dermatophytes are a group of fungi that live in the top part of the outer, barrier layer of the skin (the stratum corneum of the epidermis). Dermatophytes cause athlete’s foot (tinea pedis), jock itch (tinea cruris), and most types of nail fungal infections (onychomycosis). Because the nails in PC are thicker than normal, they are often mistaken for nail fungal infection and treated with terbinafine. Unless the nails or feet are infected, I know of no reason why terbinafine would improve PC.”

It is possible for those with PC to get a secondary fungal infection (such as a nail infection or athlete’s foot, etc.) An anti-fungal treatment will not improve the PC condition; it may work well to treat a secondary infection. Most of these drugs are not designed for long term use; they are designed only to treat an infection.

K16 patient: “I, on the other hand, have had it quite bad (well worst after the kids anyway). Now I am at the point where I don’t even have PC in spots — it is just raw skin and itches really bad. I also see that I am getting athlete’s foot or real bad itching on top of toes and between as well.” | Physician: “It is possible she could have athlete’s foot on top of her PC, and if that is the case, it should respond to to Lamisil which is an OTC medicine.”

??? patient: “I’ve been using Lamisil for about 4 months and my doctor asked me to stop taking it because it is not going to get rid of my problem.”

K16 patient: “While chatting with my brother, he told me his new doctor has been giving him Lamisil for his feet (fungal infection) and cordisone shots!! He just doesn’t get it about his own feet….and apparently this new doctor hasn’t a clue about what PC is!”

K6a patient: “The doctor asked that we pick up an anti-fungal cream. She first thought lamisil, but changed to miconazole. At the store, the only Miconazole was a ‘vaginal’ cream, but the pharmacist said it was okay to use on feet; they just didn’t carry the ‘foot care’ package, but it would be the same. I started to immediately soak my feet with a capful of bleach and then applied the anti-fungal cream (Miconazole). I did that yesterday evening and this morning and I would say it’s already helping me a lot. Since the last 4 or 5 years, my feet started to itch a lot, especially in the heels, and since I started with this medication they’re not itching anymore. That’s great!”

Lidocaine

K6a patient: “I use a 3% Lidocaine cream and it works great.”

Medi-Heel

Description

The product contains 3-4% Salicylic Acid, Keratolytic chemical. The active ingredient is sodium hydroxide, contains no urea.

Patient comments

K6b patient: “A child-age patient finds this helpful. They apply the Medi-Heel and cover his feet in ClingFilm for 10 minutes then take the pumice stone and easily remove all the unwanted skin. Nothing is painful for him.”

More information on the Medi-Heel website.

Neosporin

Original [NEOSPORIN® First Aid Antibiotic Ointment] provides long-lasting infection protection and may help minimize the appearance of scars. #1 Doctor Recommended Brand for over 25 years. No other triple antibiotic ointment kills more types of bacteria then even the leading prescription based in laboratory results.

NEOSPORIN® + Pain Relief First Aid Antibiotic/Pain Relieving Ointment and Cream help prevent infection and provides temporary relief of pain or discomfort in minor cuts, scrapes, and burns. From the #1 Doctor Recommended Brand. Soothes painful cuts. Soothes the pain of burns.

K6a patient: “For cracks on feet that are sore and painful: Sometimes splits are in sores, sometimes they extend to the regular skin. I trim down the callus carefully around split, and put ointment like Neosporin into the crack to keep it soft. If gets dry, it will split more and hurt more. Keeping cracks soft and not so deep seems to help them heal faster.”

Petroleum Jelly

From Vaseline Website: “Petroleum Jelly is a mixture of mineral oils, paraffin, and microcrystalline waxes that, when blended together, create something remarkable — a smooth jelly that has a melting point just above body temperature. The result — it literally melts into skin, flowing into the spaces between cells and the gaps in our lipid barrier. Once there, it re-solidifies, locking itself in place.

Petroleum Jelly serves two functions: First, it helps keep the outside world out — it protects skin from the effects of weather and exposure. Second, it acts like a sealant to help keep the inside world in — it forms an occlusive barrier to the natural water loss of our skin. So skin that is dry and chapped is protected from drying elements, enabling skin-softening moisture to build up naturally from inside the skin itself.”

K16 patient: “I was using the Lavender or Baby petroleum jelly to help with the smell of my feet during the summer. I always remember what the Harvard Dermatologist said at the Salt Lake Patient Support Meeting in 2007: that Petroleum Jelly has no moisturizing qualities. My problem during the winter is dryness. Now there is a Petroleum Jelly with Shea Butter and I’ve been using it for several months now. I love it!”

K6a patient: “I have very dry lips. The cracks near my mouth can split or turn into soggy white sores, and sometimes they turn to impetigo. I use Vaseline or lip balm often. If the lips crack or turn to impetigo, it is important to keep some kind of ointment on it. The cracking can to lead to an infection if not careful.”

K6a patient: “In winter, I put lotion or Vaseline on my body. Urea and Lachydrin burn and do not work and some perfumed body lotions burn too. I usually use suave or generic brands without perfumes. Tight jeans or corduroy pants seem to irritate the bumps. I usually wear knit pants (cotton).”

??? patient: “I have bumps on my elbows, knees, and buttocks. I put Vaseline on my elbows and wrap a bandage around them for a few days until they are soft and enough to “twing right off”. On my knees, I use a good moisturizer as often as possible. On my buttocks, I use moisturizer as often as possible, usually before bed to let it breathe without anything on it besides the moisturizer. I know have no more bumps on my knees and elbows now, but I still moisturize them to prevent the bumps from coming back. It helps the buttocks too. It can take a while for progress but they will go away if you keep working at it.”

??? patient: “Apply Vaseline and cream on cysts.”

K17 patient: “I use creamy petroleum jelly on my arms and legs.”

??? patient: “Dry skin around and on thick skin is itchy and painful and the blisters may crack. I use Vaseline or generic petroleum jelly. Put it on your feet (which don’t always have to have blisters, but it keeps them dry and bandaged), then socks and slippers or shoes. It keeps your feet soft and dry.”

K6a patient: “The sores on my feet get dry and painful. I use Vaseline or generic petroleum jelly. Put it on your feet before putting on socks each morning or use after trimming and washing sores. I am addicted to Vaseline! It keeps sores from snagging on socks and prevents drying and cracking, which hurts or is uncomfortable.”

K16 patient: “I usually use Vaseline the night before. In the morning it is ready. I use a blade and cut them.”

 

Phytex Paint

Phytex Paint is used for the treatment of fungal infection. To use, paint it on to the affected areas morning and evening and after washing.

K6a patient: “I prefer hard skin to soggy blisters and soft skin. Phytex Paint, which is for athletes foot, works a treat to soak up the soft skin.”

Topical Ibuprofen

FDA NEWS RELEASE AUGUST 20, 2009
FDA ISSUES WARNING LETTERS TO MARKETERS OF TOPICAL IBUPROFEN DRUG PRODUCTS
PC Project applied and received IRB approval for a study of topical ibuprofen believing these were approved over-the-counter products. However, the FDA has ordered all companies to stop marketing this product as it has not been approved for safety.

We know that several patients found this very effective. We are disappointed to not be able to go forward with the study at this time. We note that some companies are continuing to sell the product on-line and have included disclaimers regarding non-FDA approval.

Also, at the 2009 Patient Support meeting in Salt Lake City, one of the physicians suggested a similar product Soloraze gel which is by prescription only. Several patients are trying this on their own and will report feedback. We’re gathering additional information and will post it when available.

Biatain IBU

From the Biatain distributor website:

Biatain Ibu is a medicated patch that applies ibuprofen directly to the site of the wound. Some patients have been able to find pain relief on their plantar keratoderma by using these patches, although a clinical investigation of the effects of topical ibuprofen has not been completed.

Biatain Ibu is the first dressing to combine moist wound healing with an active pain reliever. In addition to the advantages of the soft and flexible foam, this dressing releases ibuprofen evenly into the wound. This may help to ease pain from the wound during wear and when changing the dressing.

A pdf with more information on Biatain Ibu

Voltarol

K16 patient “I’ve been trying some topical pain relief. Voltarol. It’s a topical anti inflammatory and I’m sure it’s helped. I try to keep my pain at a doable level by By managing how many steps I take, really. Today I went to a large shopping mall, I hired a wheelchair. I shopped for 4 hours. When I left I didn’t have much pain. Since then I’ve done some chores, taken a break to sit for an hour, then I need to go grocery shopping. If I hadn’t of used the wheelchair I would have managed 60 minutes at the mall, and then be in pain for the next few days. I try to keep my feet in better condition by not over doing things. Voltarol will take the edge off of the pain when there are days I have to walk more. Managing what I do is the only thing that works for me. If I take pain killers, sure I can walk more, but then I end up with worse pain….. it’s a pain!

Prescription Treatments

Bactroban

Bactroban is an antibiotic that treats or prevents infection that is caused by bacteria.

K6a patient “When I get feet infections, I use Rx Bactroban.”

See the PC Wiki section on infections for more information on treating and preventing infections associated with PC symptoms.

Dilantin (antiepileptic)

Description

Phenytoin sodium is a commonly used antiepileptic. Phenytoin acts to dampen the unwanted, runaway brain activity seen in seizure by reducing electrical conductance among brain cells by stabilizing the inactive state of voltage gated sodium channels.

K6a patient: “Dilantin or Phenytoin is a drug for sufferers of epilepsy. I used it for 6 months to a year. I eventually went off it to have an unrelated surgery. After two weeks on drug, I had not one white blister and was able to spend 6 hours on my feet. There was still pain, but every time my doctor upped the dose, I could tell a difference. All follicular keratosis on my knees, elbows, bum, and anywhere my clothes rubbed disappeared. When on Dilantin, my head felt ‘right’.. felt like I was more balanced in myself. It made me sleep like I have never slept before. I was zonked out before my head even hit the pillow. The downside was that, if I forgot to take a tablet, I would get emotional and a little bit unbalanced. When I went off it, my bumps and blisters came back. Just recently, I went back on it, but then off it again because we are deciding what to do about the kid thing (it’s a category D drug — i.e. can cause deformities). Apparently, it works on the part of the brain that controls the central nervous system and someone I spoke to had a theory that it stops the body over-reacting to the skin build-up. The best effect it had on me was that I had no white blisters and was able to stand for a lot longer and walk longer too. It also made every single follicle bump disappear. Ever since I stopped it, my feet have become slowly worse, but I do wonder if it is related to me just doing more stuff now — or maybe I got used to doing more stuff while I was on it.”

DrySol (anti-perspirant)

Anti-perspirants help keep feet from sweating. Apply at night. PCers have recommended Dry Sol (prescription).

Drysol (brand name for aluminum chloride hexahydrate) is a prescription medication commonly prescribed for excessive sweating. A fairly common problem, excessive sweating can be limited to the armpits, but often affects the palms and soles of the feet as well. Once a person has tried several different kinds of over-the-counter anti-perspirants without success, doctors often recommend Drysol.

Drysol is reported to work in 80 percent of the people who use it for excessive sweating. Doctors generally recommend applying it to problem areas after drying the skin completely. Wearing it only at bedtime and then washing it off in the morning with plain water reduces the chance of skin irritation.

Fluocinonide

Description

“Fluocinonide cream USP 0.05% Anti-Inflammatory is a prescription topical solution used to relieve symptoms and shorten recovery time of many common skin conditions. Doctors often prescribe the cream for eczema, poison ivy and oak exposure, and several other forms of dermatitis. Fluocinonide is a synthetic corticosteroid that works by stopping the immune system’s inflammatory response and preventing further irritation. It is important for patients to follow their doctors’ orders carefully when using the cream to achieve the best results and avoid potentially adverse side effects.

It is usually used over a short period of time and there is little or no data on extended use for chronic conditions.

Topical corticosteroids like fluocinonide cream are commonly used in the treatment of skin disorders, though medical researchers are unsure exactly why such drugs have anti-inflammatory properties. When the cream is absorbed into the skin, it constricts nearby blood vessels and halts the distribution of inflammation-inducing chemical signals from the immune system. Fluocinonide cream has proven very effective in relieving itching, redness, dryness, and localized swelling when it is used as directed by a physician.

Most people who use fluocinonide cream as instructed do not experience negative side effects, though it is possible for dryness and itching to actually worsen with frequent use. Some people are allergic to fluocinonide or inactive ingredients, and may experience hives, swelling, and skin irritation that are not limited to the area of skin on which the cream was applied. A severe allergic reaction can cause airway constriction and, in some cases, lead to dizziness and a rapid heart rate. An individual who experiences any adverse reaction should stop using the cream and seek immediate medical care.

Doctors are very careful when prescribing fluocinonide cream for infants and young children due to the possibility of serious health complications. Corticosteroids can cause hormonal imbalances in young patients, leading to delays in growth, weight changes, and high blood pressure. Some children acquire a blood disorder called Cushing’s syndrome after taking corticosteroids. Children who are prescribed corticosteroids typically need to receive regular checkups so their pediatricians can make sure they continue to develop normally” (“What Is Fluocinonide Cream?” WiseGeek. Conjecture, n.d. Web. 14 Sept. 2012. <http://www.wisegeek.com/what-is-fluocinonide-cream.htm>).

K6a patient: “I’ve been on a new medicine from my podiatrist called Fluocinonide Cream USP 0.05%. It has made the calluses on my feet slowly go away and my feet are like new. I still have the thick ones on my heels, but the main flat portion of my feet feel amazing — best I’ve felt in 43 years. I use it 2X a day (morning and evening) and can’t thank my doctor enough for this.”

K6a patient: “Well, I’m on day 3 of using fluocinonide solution (not cream – liquid form, same 0.05%).  I have noticed the calluses are softer (similar results to when I used urea creams).”

More information on Fluocinonide topical cream

Salicylic Acid

Salicylic acid is a key ingredient in many skin-care products for the treatment of acne, psoriasis, calluses, corns, keratosis pilaris, and warts. It works by causing the cells of the epidermis to shed more readily, preventing pores from clogging up, and allowing room for new cell growth. Because of its effect on skin cells, salicylic acid is used in several shampoos used to treat dandruff. Salicylic acid is also used as an active ingredient in gels which remove warts. Use of concentrated solutions of salicylic acid may cause hyperpigmentation on unpretreated skin for those with darker skin types, as well as with the lack of use of a broad spectrum sunblock.

K16 patient: “For my calluses, I’ve been using salicylic acid with good results. The Rx I have is for 6% and I’d like to find something not quite so strong.” | MD comment: “You asked about finding a cream/lotion/gel that had a milder concentration of salicylic acid (somewhere around 5%). The 6% strength are prescription only (Rx) — so you’ll need to have a doctor write a prescription for any of those. I also looked at some of the 3% creams — and found that just doing an online Google search will give a number of things that you can get over the counter (OTC). I included one example that I found online that is marketed for psoriasis, but should work just as well on hyperkeratotic calluses found in PC.”

K6a patient: “I have calluses starting to grow more on my palms. I went to the doctor and the doctor didn’t know if salicylic acid would help and I am being referred to someone else. I have started riding a bike and going to the gym to lift weights.” | MD comment: “I think the PC web page on salicylic acid is very good and explains it well. I also think that the cause is the friction is creating the calluses and no matter what he uses to soften or reduce the thickness of the callus (such as salicylic acid), if he continues to have the friction, the calluses will remain. In fact, it seems to me that once the calluses have formed, it is more difficult to get them to regress by avoidance of friction than it is to prevent it in the first place. I would describe this to him as a balance of life issues type thing — that only he can say whether the enjoyment and health benefits he is getting from the cycling and weight lifting is worth the discomfort that the callusing brings. You could try and find some type of anti-friction gloves to use.”

K16 patient: “We are using Urea 40 cream and salicylic acid and my husband has worked on his calluses diligently for the last few months and it has made a huge difference.”

K16 patient: “I use RE Salicylic Acid 6% creme that slows growth.”

K16 patient: “I do not recommend salicylic acid. I was using it on one hand for a few months and it seemed to be helping, but I have now stopped using it and it made the calluses on my hand come back 3X worse than when they were to begin with and I wish that I had not tried it.”

K17 patient: “I have a new Rx for Keralyt Gel. As the name implies, it’s a gel in a tube and I have to apply it using rubber gloves. Using it about every third night seems to keep the calluses on my heels to a minimum. There is a minimal amount of callus left and very little to ‘trim’ off now. I’m now trying it on the sides of my big toes and the ends of the affected toes.”

Urea

Urea is an emollient (skin softening agent) which helps to moisturize the skin and is used in topical dermatological products to promote rehydration of the skin. If covered by an occlusive dressing, 40% urea preparations may be used as keratolytic agents (for debridement of nails and removal of calluses).

Generic Name: Urea Cream, Gel, and Ointment 25%, 30%, 40%, and 50%

Brand Name: Examples include Carmol 40, NS-8 and Keralac

K16 patient: “I use Urea Cream (40%) that is a tissue softener.”

K17 patient: “For thick nails, I use a Rx Urea 40% Gel. This comes with an applicator and looks like clear nail polish. I use it twice a day and it dries pretty quickly (less than 5 minutes). I have been using it on my two thumb nails for only one week and have noticed one of them is considerably thinner. The other one (right) was thicker to begin with.”

K6a patient: “[My doctor has] given me a product called NS-8 which is a heel balm complex cream to rub sparingly into the hard areas of my feet each night.”

K17 patient: “I’ve used Carmol40 (40% Urea) Cream on my calluses off and on since July 2007. It seems to stop the calluses on my feet from growing so fast. I cannot use it daily as was prescribed because it causes my heels/feet to blister. I do use it 2 or 3 times a week, though, and have noticed a change for the good. There is less callusing and less to trim when I do my weekly trimming.”

K6a patient: “There is also a paste my grandmother has been using daily for many months and her calluses have disappeared totally. She tells me that after having used this paste every night before she went to bed, the calluses started to peel off her feet until one day she could remove what she called ‘the heart’ of the callous — a tiny, white thread that she pulled out from the middle. As for the paste, this is something that anyone can buy at the drugstore, there was no doctor involved. It is also cheap. I know that this paste has been out there for many years, the name of the paste is called EXCELSIOR and according to the tube contains: Ácido Salicílico and Excipiente. Again,these are the Spanish names/terms written on the product. The producers are: Laboratorios GRISI.” | PC Physician Panel member; Dermatologist: “I am not certain what the paste is, but it sounds like it may be urea paste, potentially with some other keratolytics added as well. The urea (if that’s what it is), is a substance that reduces the cohesiveness of the calluses and will again, help with the thickness of the calluses, but will not affect the underlying disorder.”

K16 patient: “I am a older women with PC who visits my podiatrist once a month. He keeps the calluses cut down on my feet. As I’ve been aging (and gaining weight), the cracks in the calluses have gotten worse (and multiplied) to the point where it’s painful to walk. This has been happening for YEARS, and at night especially, I’d be walking on the balls of my feet to keep pressure off the cracks. Over the years, my podiatrist has given trial size creams, etc., just to try to see if anything helped. About 3 months ago, he gave me samples of “Kerol Emulsion 50% Urea,” which I started using in the AM and PM. Once I used the samples up, I requested a prescription, which I got and have been using faithfully. Within 1 month, most cracks were healed and new growth slowed down. Within 6 weeks, virtually all cracks have healed and I can actually walk flat footed from morning to night. It’s not a cure, but boy, the relief is the next best thing.” | PC Physician Panel member; Dermatologist: “As we discussed, urea has been used for a long time to soften and smooth thick skin — we often used 20-40% urea on palms and soles in patients with keratodermas. It is also used for ichthyosis, etc. I think you could post this on the web as it doesn’t have significant toxicity and it might provoke some discussion of others who have used urea products. The 50% emulsion is a new formulation and also contains lactic acid which has keratolytic properties. With the thick callouses of PC, I would be surprised that it would be very effective unless used under occlusion (i.e. plastic wrap) and if there is too much thinning, it might increase the pain. As the patient noted, it may help to heal fissures on the feet.” | PC Physician Panel member; Dermatologist: “50% is really a high percentage — we used to use 40% under occlusion (i.e. plastic wrap) to thin nails and it will soften just about anything at that percentage. I am not familiar with the Kerol emulsion formulation (though I see on the web, it is in a zinc and lactic acid containing vehicle), so I can’t comment on that. I wonder how thick the calluses were to begin with. It would be interesting to find out more about this particular formulation and to see if some other patients might be willing to give it a try systematically. A prescription is required. I think if you had 5-10 people willing give it a try over 6 weeks you would get a pretty good idea about whether it was something you wanted to pursue through a more rigorous trial (or not).”

Other treatments (herbal, homeopathic, miscellaneous)

Formula 303

An All-Natural, Homeopathic Formula used for Relief of Muscle Spasm, Pulled & Tight Muscles, Tension and Stress.

??? patient: “I take the natural relaxant supplement called Formula 303. The main ingredient is Valerian Root. Sometimes, when I’m having a really hard time and getting off of my feet is not an option for me, I will take 1 200 mg ibuprofen along with the Formula 303 (which is not addictive).”

Gentian Violet

Description

Gentian violet has antibacterial, anti-fungal, and anthelmintic properties. It is commonly used for:

• Marking the skin for surgery preparation and allergy testing
• Tinea; e.g. Athlete’s foot, jock itch, and ringworm
• Candida albicans and related infections; e.g. thrush, yeast infections
• Mouth ulcers
• Impetigo, used primarily before the advent of antibiotics, but still useful to persons who may be allergic to penicillin, as it cleans the open sores and prevents spread of the contagion
• Abrasion; It has also one of the best agents for “scabbing” up an abrasion or “strawberry” type of weeping wound where the flesh is abraded away. It will prevent infection in almost any wound or burn and quickly help the epithelium form a scab. It does not burn when applied and temporary skin discoloration is a minor side effect.

Gentian violet may have some benefits with PC infections and needs further exploration and testing.

Olive Oil

K6a patient: “I rub olive oil on my feet, let it soak deep into my skin, and then scrub off the oil with dish detergent. It was recommended by my dermatologist and took away the burning feeling.”

Rose Hip Seed Oil

Rose hip seed oil is a pressed seed oil, extracted from the seeds of a rose bush which grows wild in the southern Andes. It is unique among vegetable oils in containing retinol (Vitamin A). Rose hip seed oil is high in the essential fatty acids — linoleic acid or omega-3, and linolenic acid or omega-6. It is commonly used in skin care products. It is used for a variety of skin conditions, including dermatitis, acne, and eczema, for mature and sunburnt skin as well as brittle nails. Rose hip oil is also frequently used to heal scarring and diminish photo aging.

K6a patient: “The dry skin around and on thick skin is itchy and painful. The blisters may crack. I use a skincare product based on Rose Hip Oil and find it helps on very dry skin, especially on my heels which would get very cracked in the summer.”

Talcum powder (baby powder)

From Wikipedia: “Baby powder is an astringent powder used for preventing rashes on the area covered by a diaper (see diaper rash). It may be composed of talc (and also be known as talcum powder) or corn starch.”

K16 patient: “I use talcum powder or foot anti-perspirant to keep my feet dry.”

Tiger Balm

Description from the Tiger Balm Website

Tiger Balm — a brand that millions use worldwide for quick, effective relief of their body aches and pains.

K6a patient: “Tiger Balm is found in Thailand (for gnat bites). I rub it into the veins around the ankle and it relaxes the whole foot, relieving pain.”

Tea Tree Oil

Tea tree oil is an extraction from the Melaleuca tree. Tea tree oil or melaleuca oil is a clear to very pale golden color essential oil with a fresh camphoraceous odour. It is taken from the leaves of the Melaleuca alternifolia, which is native to the northeast coast of New South Wales, Australia. The oil has beneficial medical properties (including antiseptic and anti-fungal action), and is also believed to have beneficial cosmetic properties. MOST USED FOR INFECTIONS OF NAILS & FEET, Tea Tree Oil can be found [here], other places online, and in many health stores.

K16 patient: “We heard about tree oil from our son and his Australian friends. My husband decided to give it a try on his feet, especially when they swell up and get infected…and it does seem to work! They don’t stay infected as long and it aids in the pain, but it does have a unique odor (in other words, stinky! ha ha), but after a while you kind of grow to like the “smell.” I guess the aborigines from Australia have used it for centuries for every ailment and it has been only within the past century that “white men” discovered it and now market it. A great product! I keep it handy.”

K6a patient: “I use Tea Tree oil for nail infections. It is used as both a prophylactic (prevents the infection) and as a treatment. Not a miracle cure, but seems to help somewhat.”

K6a patient “For nail infections I use Tea tree oil — An Australian natural oil known for its antibacterial properties. I soak my hands and feet in water with drops of the oil in water.”

K16 patient: “I have some type of fungus in my groin area — pink blotches with a chalky feel. They itch sometimes and I’ve been treating them with tea tree oil to reduce the itch and make them go away.”

K17 patient: “I have tried a lot of things including Tea Tree Oil on my calluses. It did not work for me, but does seem to help when a toenail gets inflamed. My dermatologist recommended AmLactin (Rx only I believe). There are several over the counter remedies I’ve tried as well. One that works fairly well for me (couple times a week at night) is Heel Rescue Superior Moisturizing Foot Cream. It comes in a 16 oz jar with a pump in the middle. It doesn’t take a lot and, as I said, I only use it a couple of times a week when I’m already sitting in the bed. A little goes a long way. I guess what works and for one may or may not work for another.”

K6b patient: “For my skin, I use tea tree and aloe lotion.”

Patients have discussed the need for more effective pain medication. Many regularly use various painkillers available to reduce and mask the pain but of their reluctance to be on them long term because of side effects. They will also have to pay later for the activity they did while the pain was masked.

Ibuprofen

K6a patient “Once a week at church or jail when has to stand a lot 3 to 4 pills. Depends on how much she walks takes about 45 mins to start working. Hang in there but if standing and doing stuff three hours later pain breaks through” If pain breaks through. Going on vacation depends on what is going on maui go in morning booked events water supposed to be calmest so do pain pills try and stay on top of it. Once she feels them she kills them

K6b patient “What pain medication do you guys take? Ive always tried to avoid where possible and only take ibuprofen when i really need to however i think im getting to a point where i need something a but more substantial.”

K6a patient “Ibuprofen, but on special occasions only. Avoiding being on my feet is the only long-term solution, really. I have an office job that does not require much walking and I have someone come and help with cleaning the house etc. I do understand the feeling of being left out. When I was younger, I tried to hang with the others and asked a pharmacist which painkiller she would recommend if I was out drinking. The look on her face… (She said ibuprofen, btw). Even with that, so many nights I would come home, collapse on the floor and just cry. Maybe trying to make friends through activities that we can do is one way – a reading circle, painting classes… “

K6a patient “If I take prophylactic ibuprofen ahead of a party where I’ll be on my feet, I definitely suffer less the next day”

K6a patient “I have been taking meds for my PC k6a since I can’t even remember..just to be able to do anything!! Tylenol, Excedrin, Ibuprofen..(also surgery for a bleeding ulcer because of it all). Just to be able to walk is worth it. I am taking Tramadol extended now. When the meds wear off the pain is worse.”

K6a patient “I usually take an 800mg ibuprofen with breakfast. I call it vitamin “I”. This allows me 4 hours to do the things that need to be done. I have a stash of percocet for the bad days. Neither eliminates the pain. When the meds wear off, I pay dearly.”

K6b patient “I took ibuprofen for 10 years in order to dance. I paid in two ways. The next day I was in agony and after 10 years I developed Barrett’s Esophagus which luckily did not turn into cancer. Because it did not turn to cancer, it was worth every minute but I would not recommend it to anyone. Now, i can’t take it at all and had to leave behind many of the foods I love, forever.”

K6a patient” I take ibuprofen once or twice daily. If I have an activity I know is going to be rough, I take a norco. So example, I plan on mowing my lawn and doing yard work in an hour from now so I just took a Norco. I’ll back that up with 2 ibuprofen in 2 hours. Then I shouldn’t be in too much pain when I’m done and I can get off my feet for the good part of the rest of the day”

K6b patient “I took ibuprofen for many years and now it’s chewing through my stomach lining so I’ve had to quit now I take cbd oil 25:1 and it’s helping but it took some adjustment to get used to it.”

K6a patient “Yes you pay for it afterwards. Usually ibuprofen could get me through a wedding (I used to photograph weddings) for around 8 hours. But then Ibwas down the entire next day. Once on vacation in a tropical setting I used ibuprofen to sight see. The next day the same. And the next. By the fourth day of solid walking around all day my feet grew blisters, and inflamation in the form of redness and swelling. Ibuprofen didn’t help at that point. I had to take the day off and stay in hotel room. I could barely walk the rest of the trip. So I think at least with my experience on skipping tropical sightseeing unless I’m doing it from a ship or train or car without walking everywhere. Because you really can only use ibuprofen for a short term purpose because of the long term side effects but also it’s effectiveness wears out long term. But that’s just how it is in my case.”

Naproxen

K16 patient “I take naproxen for the pain (stronger anti inflammatory than ibuprofen). I use it sparingly, so occasionally as required.”

K6b patient “I’ve got naproxen but it didn’t do anything for me except make me feel tired and headachey”

K16 patient “Medication only when I need to do something, naproxen. Yes I pay afterwards but does help with the pain at the time to a degree.”

K6a patient “I have been relying on multiple doses of Excedrin daily for more than 60 years because of the pain. I learned long term use results in anemia. I chose pain relief.”

Paracetamol and Pregabalin

K16 patient “I can’t take anti inflammatories because of my kidneys, so I take paracetamol as I need it but I also take Lyrica (pregabalin is the drug name) 25mg morning and night, it’s really good for nerve pain so helps a lot with the burning/shooting etc. You can take much higher doses of it but I’m very sensitive to meds that make you drowsy (as I already have severe fatigue) so I stay on a low dose, but I know people that take 600-800mg per day so there’s plenty of room to take as much or little as you need or can tolerate!”

K16 patient “I take panadeine forte daily which is codeine 30mg and paracetamol. I got to the point where I don’t want to have any limits on what I can do and one tablet every 4 or 6 hours is enough to keep the pain at bay, if I am spending alot of time on my feet I will take two at a time. I also take tumeric/Curcumin and fish oil daily as an anti-inflammatory or ibuprofen if I am in alot of pain but try to avoid it because of tummy damage in the past. Codeine is prescribed, they’ve got very strict here with codeine as it used to be OTC until this year, was easier to get OxyContin at one stage! Tumeric and Curcumin is health food shop. Actually one more I’ve tried is Mobic an anti-inflammatory which is a bit gentler on the tummy, is prescription but makes you quite tired so I don’t use it much.”

K6a patient “I take these antibiotics (Lymecycline Capsules, hard 408mg). I used to get infected blisters. I was ill January 2019. These really do work if you get cellulitis. That’s what they called it. I was on high dose when I had it. I’m on low dose to stop infection.”