The faces and voices of psoriasis. (Photography credits: David Walter Banks, Meenu Bhardwaj, Ken Cedeno, Ryan Collerd, David Eulitt and Shana Sureck for The New York Times)Many chronic diseases are invisible, taking a toll on the individual but not immediately apparent to outsiders. But the skin condition psoriasis causes obvious changes leading to itchy, scaly skin on the hands, legs, scalp and other body parts. Not only is it painful, but it can also be isolating, because sufferers are embarrassed by their appearance.
Today’s Patient Voices by Karen Barrow focuses on seven men, women and children with psoriasis, a chronic disease of the immune system that appears on the skin, usually as thick, red, scaly patches. Many people with psoriasis also develop psoriatic arthritis. According to the National Institutes of Health, as many as 7.5 million Americans have psoriasis.
You’ll meet Christine Morris of Limerick, Pa., who talks about mothering a child with psoriasis. Her 5-year-old daughter, Carly, also is interviewed.
Scott Bell, 45, of Woodstock, Ga., talks about coping with arthritis pain, while Richard Gates, 64, of Federal Way, Wash., talks about his search for alternative remedies.
And you’ll meet Diane Talbert, 50, of Temple Hills, Md., who was quarantined for three months as a child until doctors from the next county diagnosed her with psoriasis.
“It was very heartbreaking,” she says. “I never wore short sleeves. I never wore sheer pantyhose. I didn’t have a lot of friends, because I didn’t want friends. I didn’t want anybody to see me with this disease.”
Ms. Talbert urges fellow sufferers to keep searching for a dermatologist who can help them.
“You don’t have to suffer with psoriasis anymore,” she says. “Make sure you’re getting the right treatment. I went 40 years without the right treatment, and that’s 40 years of my life gone.”
Click here to listen to Patient Voices, and then please join the discussion below.
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From 1 to 25 of 57 Comments
This makes me wonder about a boy in my high school who always wore a jacket zipped way up even in the extreme heat of the South. I always wondered why he did that and now I think it could have been he had psoriasis.
— LJBI was diagnosed with psoriatic arthritis (PsA or PA) in November 2008 after having unexplained pain for more than one year.
The drugs used for treatment are scary. But I was told to fear the disease, not the treatment. And it is a scary disorder.
Trying to get people to understand how this disorder has changed my ability to do normal tasks isn’t easy. I’ve discovered it’s better to keep it to myself. I do suffer in silence. I’m fortunate that I’ve found a chat group of other PsA sufferers. Not only can I rant and rave there, I learn more about treatments and research.
I can only hope a cure is found soon.
— KatI struggled with psoriasis on my elbows for 20 years. I went through hundreds of dolloars of expensive creams and lotions. A country doctor suggested an old remedy-coal tar solution aplied topically. It took a couple of years but I am free!
— Garrett Pendergastfor more info on psoriasis and support groups visit the national psoriasis foundation at http://www.psoriasis.org .
Steve
— Steve JI am lucky with my psoriasis. I am convinced that it is a reaction with my immune system. After years of treatments that helped marginally, Nizoral shampoo cleared up the rashes on my face completely and have kept them away.
With luck, as the knowledge about immune system reactions increases more simple treatments for psoriasis will be found.
Good luck everyone.
— Mitch AldermanNote to the person using coal tar. I have a Phd in molecular biology, and have worked with many carcinogens over the years. I know that coal tar contains many complex cyclic hydrocarbons that have the potential to cause cancer. If you are light skinned or susceptible to skin cancer, I would most definitely avoid it if you can.
— RookBurt’s Bees lotions did wonders for whatever I have on my hands and feet, about which I have been told (by dematologists) it is, and is not:
psoriasis
contact dermatitist
allergies
aging
systemic something
et al
My skin is now soft and less inflamed. Burt’s Bees is not a
— kitvancleaveprescription lotion and I have no financial gain to write this,
and no connection to the company. I am however delighted to find it.
Quick note FYI: In case this helps anyone, I used to get inflamed patches on my elbows. I drastically reduced sugar intake (just for general health) and one of the many great benefits was, no more scales. Coincidence? Who knows. But I indulged in sugar over the holidays and back it came. Good luck to everyone.
— AnnThanks for this, but this 33-year-old with PsA wishes there were a transcript!
FROM TPP — If you look at the slideshow, you’ll see a summary of all the patient discussions.
— BenMy psoriasis began at age 30, starting on my genitals and gradually spreading to my calves, knees, outer thighs, hips and lower back, belly button, upper arms, elbows and scalp. No doubt it was triggered by the stress of putting my career on hold and moving to west Africa for Peace Corps service. Though it covers only about 10% of my body area, I understand these peoples’ stories of frustration, depression and pain.
I would like to share two things that have helped me to reduce my condition substantially in the last couple years:
First - I noticed a rather sudden reduction in my scaling while on vacation two summers ago. I wondered if it were the sun or the relaxation, but it turned out to be some shea butter soap I was using. Ever since, I have applied shea butter oil (purchased at a local natural foods store) to my affected areas twice daily. It hasn’t reduced the size of the areas, but it nearly eliminates the scaling and the itch.
Second - I met a woman this summer who recommended bioflavonoids and I began taking something like 1,000 to 1,500 mg/day. This has reduced my affected area to less than 20% of what it was. If I stop taking the bioflavonoids, it begins to come right back, so I assume I’ll be taking this supplement for a long time.
Also - Please take care of your g-i tract, consider abstaining from alcohol, and try to make the diet and exercise adjustments that will put you on the trim side… I’m hoping these will help to reduce my heart and diabetes risks in any case.
Finally - I understand our bodies are each of them different and there’s no one cure (at this time) for all. Best wishes to everyone out there who is suffering from this (and other) chronic condition. May we all see clearer days ahead…
— TravisI’m 54 and have struggled with psoriasis since age 6, going through various periods of clear, mild, and severe.
— Doug E. G.It has slowly become more stubborn over the years; for example, sunlight and UV therapy used to clear it but no longer have any effect.
I’ve tried everything that has come on the market with extreme differences in success; some had no effect and some worked well - for a while.
The most successful for me in the last few years have been the relatively new injections.
However, they can have some serious side effects and require periodic monitoring of the liver.
They are also criminally expensive: about $2200 per month and of course I could only use them when I had health insurance, which I no longer do.
As I’ve gotten older I’m far less embarrassed about it, although conscious enough that I mostly cover up when it’s more severe.
I’m extremely fortunate that - so far - I have next to no psoriatic arthritis.
My recommendations are: try everything, moisturize religiously without dyes and perfumes, work hard on NOT feeling embarrassed or troubled by it, and never give up.
If there is any way you can avoid winter, DO SO: cold and dry weather and reduced sunlight always exacerbate.
If your case is mild enough for tars and shampoos to be effective, thank your lucky stars!
I was diagnosed with Rheumatoid Arthritis about four years ago, and have been taking Orencia for the past year with some success. Recently, I was diagnosed with Psoriasis in a few isolated areas on my body, and now I wonder whether I have RA, or PSA? The treatments for both are relatively the same, but I wonder whether there is a more effective treatment…
— BobI have had psoriasis (guttate and plaque) since I was 7 years old. There’s basically no body part that is not at one time affected. Being a kid with psoriasis was terrible. They actually put me in special gym classes where I wouldn’t be with the others. I was with physically or mentally disabled kids instead. Also, I never wore short sleeves or shorts; so, I definitely stood out in a crowd in 90 degree heat and high humidity.
— JulieThe coal tar was a standard treatment years ago, and some still stand by it. The treatment was to take a bath in it, or smear it on for several hours (overnight) before washing it off. It stains everything.
The sun (in small doses and wear sunscreen since sunburn is a big no-no) helps and so does the salt water at the seaside. Keeping your skin as moist as possible is also necessary no matter what you use. I use Alpha Keri Bath Oil after a shower, and also a daily moisturizer like Eucerin.
Topical corticosteroids are common and useful with flair-ups, but I have only had two complete clearings. One, after a calm, relaxing summer with 20 minutes of sunshine a day. It lasted about a year. The 2nd, after light therapy at the dermatologists. It rebounded the minute we stopped the treatments. They are expensive, so I didn’t consider continuing. The new treatments they offer actually repress your immune system which can leave you open to infection. It is not nice living with psoriasis…cosmetically it’s embarrassing, and itching is terribly distracting. However, I have trouble justifying suppressing my immune system for what is mostly a cosmetic problem. If I had psoriatic arthritis, I might reconsider. Stay healthy and happy.
My dermatologist prescribed hydrocortisone (in prescription strength). I started to buy OTC topical hydrocortisone, and when I have a breakout I apply it twice daily. It keeps my psoriasis at bay.
— Anon Y. MousRe: #2
About 15 years ago, a dermatologist diagnosed my psoriasis and said to me “Congratulations, you have a new hobby.” Was she right!
I’ve gone through the full spectrum of treatments, from coal tar to light to methotrexate to biologics. Every treatment works, but for me, only for a while.
About a year ago, I developed psoriatic arthritis. It is a disease that affects every part of your body. I was a borderline diabetic, but it pushed me to needing to take insulin, as my A1C became way too high. The infusions I take barely keep the arthritis in check.
Most recently I have been taking baths with Dead Sea Salts (you can find them and buy them online from US companies). They relieve some of the joint pains and hold the growth of plaques down, for me.
Winter is the worst time for psoriasis patients.
— Larry R.I have had psoriasis now going on 40 years now. I have tried every know treatment and study for psoriasis through the Mass. General Hospital in Boston. UVA and UVB became toxic to my body after so many treatments. I and my twin have been cover from head to toe. Mine was so bad that my doctor wanted to hospitalize me a few times.
I guess my first cure came when involved at a Mass General study for the drug cyclosporine. Within 2 1/2 weeks, I and my twin were 100% clear. I thought I died and went to heaven. Little did I know that my insurance company would not pay for the drug because it was then considered experimental. They would rather spend more money for hospitalizations than a drug that worked.
The drugs effect wore off me after many years. Me and my twin have been now taking Remicaide for over 5-years for psoriasis and the psoriatic arthritis. I am once again clear. My twin has the arthritis very bad with pins in his neck and fingers. I need a new knee and maybe a new hip. I have also gotten some cancer and diabetes. I know with all these drugs that compromise my immune system is doing something to me. But the benefits of these drugs, gave me a life. I sat in oil for years because I was covered and it hurt to just move.
Finally, my dermatologist, Dr. Momtaz, who truly understood psoriasis passed away and I moved to Rhode Island and thought I got the best Dermatologist at Rhode Island Hospital. I gave up seeing the dermatologists since all I would see are doctors in training who knew “crap” about psoriasis. i was teaching them. My doctor would come in and shake my hand, say a few words and then leave.
I also found a lotion called Theraplex Clear and it worked great on my skin and no longer destroyed my clothes, bedding and walls.
Hang in there. I think when the cure for Aids is found, then a cure for psoriasis will also be found.
— Paul DiModicaMy psoriasis started in my late twenties, I am 60 now. Recently I was diagnosed with PA which I did not even know about before hand. My doctor prescribed Humira. While this injected drug is ridiculously expensive, it worked a miracle for me. All traces of psoriasis on my skin disappeared within 48 hours, no kidding. My severe joint pain took longer to go away but now I am exercising regularly and feel great compared to before starting Humira. Yes this drug contains live cultures and alters the immune system but it is the immune system acting up that causes psoriasis in the first place. In my opinion this is what medication is all about.
— PCGI have struggled with psoriasis since I was 5 years old. I have tried many ointments and therapies but over time my body becomes immune to the treatment.
I am currently taking infusion therapy once a month. It is an inconvenience but it is working and my skin is now clear. Also diet and exercise is essential.
We have to keep in mind not to let psoriasis control our lives. We also live in a society where appearances counts for everything. We are judged by our appearances and not by for our beliefs.
It is really difficult to explain to people what is psoriasis and that it is not contagious. I tell friends to be supportive and not be afraid.
— CPSI’ve fought guttate psoriasis for 30 years and have tried almost every treatment possible. Most treatments are initially effective but loose their oomph with time. Several years ago I stopped drinking coffee and caffeine drinks, a few weeks later my skin cleared up. I have to admit I really like my coffee, so I started drinking again - and the psoriasis came back. When I stopped my skin cleared up.
Psoriasis suffers - try giving up coffee for a month and see if your skin gets better.
— BillMI recently turned 30 but have spent the last 5 years trying to determine the causes behind the symptoms I was having, which I now know to be a combination of psoriasis and Celiac disease thanks to a doctor’s persistence and genetic screening (done on my own, and a tremendous help–and there are several great Times articles on how to take this on affordably).
I made several dietary and hygiene steps which have greatly helped me condition. Avoiding any shampoos, soaps or toothpastes with sodium laurel sulfate or sodium laureth sulfate resulted in an immediate reduction of symptoms. These harsh chemicals assist in the foaming process, and there are plenty of alternatives available (and other reasons) to avoid them.
Regarding diet, aligning your fat intake ratio is very important for this condition (and many others). Optimally you want your saturated to unsaturated fat intake ratio close to 1:1, which is thought to be the ratio when humans were still in the hunter-gatherer stage of development. A diet high in saturated fats, such as the typical American diet wherein the ratio is 20:1 or greater, leads to inflammation of all sorts (and, again, many other problems both short-term and chronic).
These steps and others substantially helped me with the symptoms of psoriasis and Celiac. I hope they may help you, too.
— Gene LI have small psoriasis spots on my arms and legs and now a few are appearing on my face. (Eeeesh.)
— MargaretI have used a prescription cream, Locoid Lipocream, which is hydrocortisoe butyrate 0.1 %. It seems to help, but ‘m not sure.
Yes, I mosturize like crazy.
Not showering too frequently also seems to be a help.
I was diagnosed when i was in 4th grade. I’m 25 now and not one part of my body does not have a plaque on it. I’ve tried many different treatments. I was clear for a few years in high school then moved to Miami for school and my skin just didn’t stop flaring. Since then I’ve gone to several dermatologists and have tried a number of treatments. I tried Enbrel and my skin cleared! It was amazing. I was so thrilled. Then I got a severe case of Strep Throat and my beautiful clear skin was gone.
I know what it is like to feel isolated and not want to wear shorts or short sleeves. I tend to hate the summer for that reason. I currently work with children. I am the Athletic Director at a small boarding school. It is painful daily changing into workout clothes and being around my students. I’ve learned to cope a lot, but some days are worse than others. It is cosmetic and some times i feel a little guilty trying to fix it, but when you get up from a chair and you feel like half your skin is left on the seat, it all seems worth it.
— KerriI am a 39 year old who has been living with psoriasis for over 15 years. After trying all the creams, jells, lotions, suntanning, moving to Florida, and wrapping myself in saran wrap, I am so happy to share that I started taking Humira over the summer of 2008. My body was covered over 85% and now is fully cleared. My arthritis is also totally gone. It has been a nightmare to figure out the insurance coverage as it is very expensive, but the folks at Humira and Abbott have been helpful with various plans to cover the costs. Good luck to all of you and don’t give up. There are many of us out there that have been through the same pain, embarrassment and chronic challenges of psoriasis.
— Mike D.My wife contracted psoriasis very suddenly many years ago. She is now 75 and is almost, but not quite free of this plague. The suddeness of onset amazed both of us. As far as therapy goes, she cannot tolerate UV and has relied primarily on Dovonex cream which seemingly only moisturizes the skin, but certainly is not a panacea by any means. She is also diabetic [type 2] and the onset of that disease occurred around the same time as the psoriasis to my recollection.
— Billthis disease truly sucks, but i’ll share my ‘treatments’ as nothing truly totally works.
— bwayne1.- sun and sea. caribbean
2.-clobetasol - it’s a prescription steroid. i use a skin and scalp version. it arrests , but doesn’t eradicate. i have been using it for years.
3.- vani cream. it is an over the counter cream with no odor and pretty much no staining. it cleared up my fingers, which used to bleed and crack. it is manna from heaven to me. i carry it around in a small container i transfer it to. i am the equivalent of a crack addict with this cream.
4.- any vacation longer than a week works pretty nice as well. stress is the biggest cause. winter is , i agree, the worst.
if any of this helps anyone, i am happy, and you are welcome