Deep itch happens under, around, or in the calluses and sometimes cysts.
Like the painful calluses, this deep itching can interfere with sleep and make the feet feel uncomfortable and irritable. Trying to itch the deep itch can cause the skin to blister and creates additional pain.
CARING FOR ITCH
Pachyonychia congenita (PC) is characterized by a number of skin findings including very painful calluses involving the plantar (bottom) of the feet and sometimes the hands. These painful calluses significantly affect the quality of life by impacting all activities that require standing or walking. In a similar manner, severe deep itching both under and around the calluses is found in many individuals with PC. Itching associated with PC is less frequently recognized and poorly studied. The symptoms can be sufficiently severe to disrupt sleep and create sores and blisters due to scratching or picking at the areas of itching.
The mechanism that creates the itching in PC is poorly understood however, both pain and itch are transmitted to the spinal cord and brain along very thin nerves called C-fibers. There is evidence that changes in PC skin may stimulate these very small nerves producing both pain and itch. This possibility has led physicians to look for ways to block these nerve impulses and improve both.
Based on current research and shared ideas from the PC Project registry, we will discuss some potential treatments for the management of the severe itching associated with PC.
Itching can be produced by inflammation in the skin. This type of itch is associated with many skin conditions like eczema or psoriasis. PC also has skin changes that produce local inflammation and may respond to medications like other skin conditions. One common product to treat this type of itch is applying a cortisone cream or ointment to the skin. The cortisone cream has an anti-inflammatory effect blocking the changes that induce the itch. These creams are available with a physician’s prescription and if used appropriately can be quite helpful in treating the itch.
Other ideas include:
- Cold can be quite helpful such as using ice packs, dunking in cold water or cold compresses.
- Topical anesthetics such as Lidocaine patches or gel can produce temporary numbness of the skin and reduce both pain and itch. Other products can be used to provide temporary relief from itching such as pramoxine, topical diphenhydramine, Oatmeal, menthol and calamine.
- Oral antihistamines such as Diphenhydramine (Benadryl), Cetirizine, and hydroxyzine can be helpful but may produce drowsiness and should not be used when driving or working around machinery
- Medications that work by modifying or blocking nerve impulses are used to manage itch and pain. Agents such as Gabapentin, Amitriptyline, and Ketamine along with other similar compounds can be used both topical and by mouth for temporary relief. These medications when taken by mouth can have significant adverse effects and should only be used under a physician’s care.
This list contains suggestions only. We are still looking at more effective ways to manage the severe itch experienced by so many with PC.
We hope to all learn together to manage this difficult symptom. Part of that learning is achieved through first finding out more about the symptoms. In 2019, PC Project surveyed PCers through an IRB approved addendum questionnaire to the official IPCRR (International Pachyonychia Congenita Research Registry). The data from this survey was published in the following article:
L Steele, J Schwartz, CD Hansen, EA O’Toole. Prevalence and Characterization of Itch in Pachyonychia Congenita. JAMA Dermatol. 2021 Nov 1;157(11). The following figure from the article shows the locations of itch in participants with PC and the Itch Subscale Scores.
PATIENT TIPS & COMMENTS FOR ITCH
K6a patient “Every day is painful, but the last 3 have been bad. The callous on the heal of my left foot started burning 2 days ago. Felt like someone stuck a red hot knife into the callous. Now I have the deep itch that I cannot scratch.”
Unknown “Gold bond pain relief cream, stop the burning and gives a temporary numbing feeling. Makes it so I can take my kids to the park and run around without pain or burning.”
K6a patient “I feel ya Mate. Here’s mine today. It’s actually finally healing. Been a big red mess for weeks. I don’t know why I haven’t posted before. You folks probably have ideas for me.”
K16 patient “I would trim the sharp edges up because they look like they probably snag on your socks. And I would probably try a piece of moleskin over that.”
K6a patient “I always use Neosporin pain relief cream. It seems to help somewhat. Lavender and coconut oil soaks as well”
K16 patient “Only my left foot itches but not constantly. Few times a day but every night when I take my socks off. I scratch it on the side rail on my bed frame every night. Sometimes so hard it starts burning. I went for acupuncturist quite a few times and the woman I had was wonderful she told me the reason I got the itch it’s because our Chi slows down and out through our feet. And because of our callus the chi gets stuck. She told me to sterilize a needle and poke holes through the callus. I do that I know it sounds very silly and it does hurt a little bit but then it stops itching.
K6a patient “ I must have itched again in my sleep 😭 three areas that had blistering are so sore an hurt so bad, any advice? This keeps happening the itch I never had the deep itches before like the last few weeks 😡🤷♀️ I have lidocaine ointment I can apply to try to numb but it won’t help the healing. There is no infection I was just at wound care 🤷♀️ any tips or tricks”
K6a patient “I’ve had them itch before especially if I have a fresh blister there, but I also have Eczema I would scratch in my sleep so my dermatologist prescribed me Hydroxyzine to take about 40 minutes before I go to sleep and I haven’t had any issues sense, it helps with the itching and makes you sleepy”
K6a patient “I have not had problems with that deep itch since I started taking tumeric, and I have seen other people comment the same, that may help you too. That looks painful, hope it heals quickly for you.”
K16 patient “When I get that deep itch and do that same thing I apply cortisone cream to help… need to let air hit it to dry it out. Hope this works for you too! I also use rubbing alcohol spray … yes it stings…but it dries it out…I find keeping it wrapped didn’t benefit me… but that is only on worst cases…usually cortisone cream works.”
K6a patient “The cortisone made a giant difference! It didn’t itch all night I wrapped both feet because this happened in a few spots, something crazy I never experienced before itching them while asleep .. geez 🙄 I learned my lesson”
K16 patient “Vitamin E oil, A&D ointment or MediHoney will help healing. Keep clean, but moist and will help the itch too.”
K17 patient “Also if you can take Benadryl it does help some.”
K16 patient “Have recently been getting deep itching beneath my heel callous. Never really had this before regularly. Wondering if it maybe related to playing badminton or maybe my skin changing as I get older. It’s so painful it’s woken me up a few times. Last night it woke me up and I couldn’t sleep or stop it itching. And today the itching has turned to pain. I am hobbling more than normal as it hurts to walk on it. When I cut my feet after this happened last time it seemed blood vessels/nerves were closer to the surface where I was cutting = painful to cut too close. Which is unusual. I don’t like it 🙁 anyone else experienced this and got any suggestions / thoughts? Thanks x I don’t think there is much to see..it is itching below the surface. I guess it is cracking…. It is where the cracks are. I’ve never really had it be this painful on top of the day to day pain that is.”
Unknown “I get this so much 🙁 If i have been running around for people during the day my feet will itch like crazy at night and it seems to be under the layer of skin that itches so no matter what i do helps it, I do find putting them in cold water helps, I usally do this before i go to bed anyway. The blood vessels i get these also after excessive pressure to the feet i.e walking more or driving more ect and it can throw me sick when trimming the skin down and it gets to that point 🙁 i have not made them bleed tho it normally seems to be a dried blood vessel”
K16 patient “Try cetirizine from go or pharmacist”
K16 patient “It’s common for me too. Also, hard to describe like an internal itch… Thanks for sharing”
K16 patient “I get it too. Haven’t been able to figure out what causes it or how to make it better really. I just try and put pressure on it and it kinda helps.”
K16 patient “You guys are extended family as I have no one else to ask in mine as I’m all alone with it now. It makes me less worried about the future to know I can ask questions in here and someone will at least be able to give me some thoughts and maybe suggestions.”
TRPV3 patient “My daughter has the same thing. She is TRPV3. It’s an awful itch that turns into pain. Lots of soaking in cold water.”
K16 patient “Yeah, mostly annoying for me…can’t scratch it deep enough..agh”
Unknown “that itch has brought tears to my eyes from the frustration – i find using my dremel on it seems to vibrate it away or i use a hair brush to scratch all around it and on it – it’s a fine line between scratching the itch or pain though!”
K16 patient “Liking the hairbrush idea..I have an electric pumice thing but feet are too bad to use all over..easier to cut them down but that may work when it’s painful. Thank you!”
K16 patient “I put hydrocortisone and massage it in really helps…”
K16 patient “I have had this before but it did turn out to be infected and fungal. Pop on the mycil talc and a bit of athletes foot cream to start with and hopefully that will begin to relieve it before you scratch and make it infected. It was all treated with creams (anti fungal and anti biotic) but the hard skin has grown weird on that part ever since. So treat it soon! Anti fungal for sure to start! Any old Superdrug cream for athletes foot xx”
K16 patient “Itching started when I was older than 40 years.”
K16 patient “Now I am 68 years old and itching and pain got worse year by year. In the night I wake up all 2 hours. There is each night standing cold water in front of my bed and all. 2 hours I put my feet into the cold water and I can sleep for about next 2 hours.”
K16 patient “Yes I have!! Sometimes it drives me crazy.. I noticed that trimming my callouses and ‘frase’ it would relax the itching. I think it’s because the deeper skin in the callous is cracked and the rubbing is itching it. So when I scratch the itch with a bit of violence, I can feel the crack and that’s when the pain kicks in🙈 don’t really have any tips, I just try to focus on something else or scratch with my fingers on the couch instead of my poor feet😇 (k16 too by the way).”
K6a patient “I have had the same this but it did not start until 8 years ago and I am 54 now. When it starts getting bad my Doctor and I have discovered that a 14 day supply of Fluconazole really helps. He also keeps me on Gabapentin 600mg 2 times a day. When I went to the conference they had in California the Doctors said we should be on Gabapentin because of our nerves. No , I have had no side effects . Another medication that a specialist gave me I can not remember the name but it was to help with excessive sweating. It helped because you know that when our feet sweat it causes blistering. I will look it up and tell you what it is. I stopped taking it because I have got to the point that I really cannot wear very many kinds of shoes. I wear SANUK shoes 95% of the time.”
K6a patient “I scratch my feet until the itch goes away and then my feet hurt from pain from scratching them. Either way, it makes it hard to sleep when it happens at night or in the middle of the night.”
K17 patient “I know of nothing which can reach the deep itch below calluses. So far, only soaking my feet in ice water will numb my feet enough to relieve the itching and pain for a short period.”
K17 patient “During my first pregnancy the pain from itching and calluses is greatly diminished. My skin was must softer and my life much better.”
K16 patient “Itching is random. I don’t see any particular time or place when it occurs. I will say that weather is a big factor in starting off your day. High humidity increases the chance your skin will be taut. Your skin becomes tight enough that you feel it may split or break open. Often, a hot shower will alleviate this condition allowing the skin to be more flexible. Itching seems to come out of nowhere, at least in my case.”
K6a patient “Itching feels like a deep burn and my only solution is elevating feet in cool air.”
K6a patient “The itching is very intense.”
K16 patient “I’m confused as to what is truly itching. The PC or the psoriasis I supposedly have between my toes, or athletes foot from using vaseline and no air getting to my feet. When the PC blisters though that is an itch 100 times worse than the itching I listed above.”
K16 patient “My heels are the worst affected with the dark spots and bleeding whilst trimming, mostly the outside edges of the heels. This is where the worst itching occurs. I do have a permanent low level itching feeling on the rest of my feet, both within callus and unaffected areas but am mostly able to ignore this. Hot weather makes it worse.”
K17 patient “Itching comes randomly”
K6b patient “Although I experience itching I associate it with the burning pain which causes the difficulty not really the itching”
K16 patient “I also feel that wounds that are beneath the callouses have more tendencies to itch because I feel that the wound is trying to heal but because of the nature of PC it does not heal totally or well and is always in a state of “healing limbo”.”
K16 patient” Some PCers have suggested using apple cider vinegar to soothe the itching. This has helped to some extent but not very much. Rubbing the foot/the affected part on some sort of fabric like bedsheets or rugs helps temporarily as well. Often it drives me crazy and I try to take away as much of the callous as I can to scratch the place with sharp instruments. This can lead to bleeding. Sometimes little bubbles of trapped water or sweat can be seen under the surface of the skin. I think they are part of the problem. When opening up and removing these bubbles, the itching can be reduced quite a bit. Also when I experience the itching, I experience some wetness, probably sweat, surrounding that area.”
K16 patient ‘I use hydrocortisone, and aggressively massage or even itch it In”
K6c patient “This is not an itching that I can scratch; I basically have to pinch the callus as hard as I can bear, which is quite painful, but this is not an itch that will be ignored!”
