Most of us rarely think about our fingernails. Sure, we're grateful for those hard little tabs at the end of our fingers when we need to pry something loose, scrape something away or drum our fingers on a hard surface to signify extreme impatience.
But what about people who lose these simple functions or struggle with the appearance of their nails? Perhaps they—or you—understand how vital nails really are. Those who suffer from nail psoriasis say that it is not only painful and irritating, but also emotionally devastating.
Jan MacDonald, 59, a member of the Psoriasis Foundation who lives in the United Kingdom, discovered suddenly and unexpectedly the toll that nail psoriasis can take.
On Saturday, July 22, 2000, she and her husband were meeting friends for dinner. In the previous couple of weeks, when MacDonald put false tips on her nails, they would not stay on.
"I had no idea as to what was happening. I have always had very weak nails. That is why I had been using the false tips for about nine years," she says.
On that Saturday, both of her thumbnails came away from the nail bed. MacDonald resorted to reattaching her thumbnails with the same glue she used for attaching the nail tips. "But the next day they were very sore and clearly an infection had set up. Something was clearly very wrong," she says.
MacDonald, who had never had psoriasis anywhere else on her body, was diagnosed with nail psoriasis after a dermatologist conducted a biopsy and ruled out fungal infection. "When all this happened, it took me completely by surprise," she says. "What was happening?"
Over the next three years, MacDonald tried Dovonex ointment (a prescription vitamin D3 derivative), Polytar ointment (topical coal tar) and finally (a prescription immunosuppressive drug), which made her sick. She eventually decided the long-term risks associated with methotrexate were not for her and stopped taking it.
"I had many days where I just couldn't stop crying, but then I would think by Christmas they would be better," she says.
Unfortunately, months went by, Christmas came and went, and years passed. Although she kept trying—she had PUVA treatment once a week for several months, tried steroid injections and experimented with herbal tablets and Chinese medicine—she saw no improvement. "My nails do not change for the better and my toenails just crumble away," she laments.
MacDonald's nail psoriasis has a physical and emotional impact on her life. She can no longer do some of the things she used to enjoy, and she also must deal with the misunderstanding of strangers. "I hate going anywhere that people don't know me, as your hands are on show all the time and it causes me terrible embarrassment," she says. "I love sewing and floristry work, but no nails makes it all difficult."
MacDonald sees pictures of people with pitting of the nails and white spots, but sometimes feels as though she is the only one dealing with severe nail psoriasis. "Mine are just a crumbled mess," she says, "and I really do feel that I am the only one on the planet with them this bad."
MacDonald is not the only one wondering, "Where do I go from here?" Many people with nail psoriasis feel as though there is no hope for them. Dermatologists also struggle, in a way, when it comes to nail psoriasis, because of the limited treatment options they can offer their patients. "I wish we had something new and different for nail psoriasis," says Phoebe Rich, M.D., a dermatologist in private practice in Portland, Ore., and a clinical associate professor at Oregon Health & Science University.
"I have been repeatedly disappointed by the response of nail psoriasis to topical medications, although in very mild cases they might provide some benefit," Dr. Rich says.
Dr. Rich and other dermatologists usually will try topical medications such as topical steroids, Tazorac and Dovonex for their nail psoriasis patients and then move on to other stronger treatments, such as methotrexate, cyclosporine, Soriatane and PUVA (the light sensitizing drug psoralen plus UVB light). However, systemic medications are rarely used solely for nail psoriasis. "Normally, the risk/benefit ratio does not justify this type of treatment," says Dr. Rich, a national expert on the treatment of nail disorders.
In the case of severe nail psoriasis, when nails may thicken, splinter, crumble or lift completely away from the finger, the dermatologist must weigh the impact of the disease on the patient's quality of life. Dr. Rich has hope that the new biologic agents will be useful for nail psoriasis, but these medications are also intended for people with moderate to severe psoriasis, and the long-term safety risks are unknown.
The best treatment so far, according to Dr. Rich, is cortisone injections around the nails. "This sounds grizzly," she admits, "but when sprayed with cooling spray and performed properly, injections do not hurt."
Dr. Rich administers an injection of corticosteroids into the skin at the base of the nail and into the nail folds along the side of the nail. These are called intralesional steroid injections, and they can be quite effective. However, many patients and some dermatologists shy away from them because of the potential for pain. "In the hands of a person who does them the right way, steroid injections are not that uncomfortable," Dr. Rich insists. "I do them in all kinds of patients, even kids, and people have them done again."
Unfortunately, as with psoriasis on other parts of the body, there is no quick fix for nail psoriasis. It takes about six months for an entirely new fingernail to grow and 12 to 18 months for a toenail to be replaced. As a result, it can take up to six months for nail psoriasis to improve once it is treated. Some people rely on cosmetic procedures to improve the look of their nails. Long, thick nails can be scraped and filed down. Color changes can be buffed and polished, or artificial nails can be applied. However, a manicurist may be reluctant to apply artificial nails to anything that looks infected or badly damaged.
As for MacDonald, she continues to search for something that will restore her nails to their previous state, and for someone else suffering from severe nail psoriasis to talk to. "I will not give up and maybe there will be a Christmas soon where my fingernails look good," she says.
Driving Discovery, Creating Community
This year, we’re celebrating 50 years of driving efforts to cure psoriatic disease and improve the lives of those affected. See how far we’ve come with this timeline of NPF’s history. But there’s still plenty to do, and we can’t do it without you! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funding to promote research into better treatments and a cure by joining Team NPF, where you can walk, run, cycle, play bingo or even create your own DIY event. Contact our Patient Navigation Center for free, personalized support for living a healthier life with psoriatic disease. And keep the National Psoriasis Foundation going strong by making a donation today! Together, we will find a cure.