9 posts tagged “psoriatic arthritis”

“I still haven’t given up hope.” An interview with psoriasis and psoriatic arthritis patient David

Posted May 23rd, 2013 by

Say ‘hi’ to David. Some of you may know him on PatientsLikeMe as db.09. He developed his first visible symptom of psoriasis at the very young age of 3. Now 22, he’s sharing his personal journey with this highly stigmatized autoimmune condition, along with psoriatic arthritis and Chron’s. See how his conditions have actually given him motivation and how connecting with others has positively impacted his life.

David Burns

Are you living with both psoriasis and psoriatic arthritis?
Yes, I am living with psoriasis, arthritis and also Crohn’s.

How old were you when you were first diagnosed? Have you had to deal with any stigma at such a young age?
I developed psoriasis at the age of 3, and 3 years later at the age of 6, I developed arthritis. I was experiencing symptoms of Crohn’s since the age of 11. However, I was only diagnosed with Crohn’s at the age of 17. I’m currently 22 years old. My childhood and teen years were very challenging. My conditions had a massive impact on my education. I missed much of school growing up, due to hospital appointments, and just generally suffering with the effects of living with the conditions. I think the worst was growing up with psoriasis, from a social perspective. It shattered my self-confidence and self-esteem. I haven’t had a girlfriend my entire life.

What impact has living with psoriatic arthritis had on your life?
Well, I’ve basically hit the inflammatory jackpot. The odds were so low that I was destined to develop psoriasis, and from that arthritis, and following that, Crohn’s. Over the past few years, I’ve been on 4 different biologics, each failing to provide me with the promised relief that I crave so badly. I’ve tried many different systemic, biologic, and topical treatments over the years, all without any avail. I’ve been through hell and back and I’ve come out smiling.

About three years ago, my psoriasis and arthritis flared up so badly that I was a prisoner to my bed. I had to pull myself along the floor to even get to the toilet, my arthritis was that bad. I was put on extremely high doses of steroids. I put on a lot of weight due to the steroids and eating tons of junk food, and fell into a deep depression. I lost friends and had to drop out of school because I missed so much. As my conditions started to improve, I couldn’t stop myself from looking in the mirror and recognizing what I’ve just been through. I’d developed extremely strong mental strength. I’d reached the lowest point of my life and come out stronger than ever.

I used that strength to motivate myself to lose the weight I’d gained. I was weighing in at 118kg (260.14lbs). I took up interval training and weight lifting. There were days that my arthritis and psoriasis were so bad, but I used the mental strength I obtained and pushed myself as far as I could. The days that I was feeling the worst I’d make sure I trained double as hard. I started eating clean and I lost 40kg (88.18lbs), as well as gaining muscle. I’ve now taken up bodybuilding. My goal is to prove that anything is possible and to never let your health get in the way of your dreams. I still train 6 days a week. I use my previous and current pain as motivation to push me that extra step. So in some aspects, I’m grateful to have had the opportunity to develop this outlook on life, as I can apply it to every other aspect of my life. I started up my own IT company and I’ve been working really hard to develop it. I’m currently 85-90% covered with psoriasis, and I’ve been using crutches to walk around for the past couple of weeks. I still haven’t given up hope yet.

What’s it been like to connect with other psoriasis and psoriatic arthritis patients on PatientsLikeMe?
It’s been an enriching experience connecting with psoriasis and psoriatic arthritis patients on PatientsLikeMe. I’ve formed friendships that will last a long time. It’s very rare that you find people that share the same pain that you get from suffering with psoriasis and/or arthritis. It’s a great feeling being able to connect with people on an emotional level and really feel that they know what you’re going through, and that they really do understand. My friends and family try to understand what I go through, but they just can’t relate, as they’ve never experienced it for themselves. PatientsLikeMe takes away the “imagination” factor that my friends and family can only provide me with, when they say, “I can only imagine what you’re going through.”

What is one bit of info that no psoriasis or psoriatic arthritis patient should be without?
Every psoriasis and psoriatic arthritis patient needs to know that there is someone out there that is going through exactly what you’re going through. They should know that you’re not alone in this fight. There may be times when you’re cornered, with your back against the wall, but you’ll make it through with strength and hope. It’s not an easy feat by any means. However, life would be boring without a challenge. Try and find someone on PatientsLikeMe that understands what you’re going through. It helps, trust me. It’s a good feeling to know you can fight against your disease with someone else at the same time. They should also keep in mind that there is treatment that will help out there. You just need to be patient enough to find it. I’ve tried 4 biologics, without relief, but I still haven’t given up hope.


Taking Psoriasis Treatment to the Next Level: An Interview with Dermatologist Dr. Jerry Bagel

Posted February 11th, 2013 by

Board-Certified Dermatologist Dr. Jerry Bagel, MD

A nationally recognized psoriasis expert, Dr. Jerry Bagel, MD, has been an investigator on more than 45 clinical trials seeking new treatments for psoriasis and other skin conditions.  In addition to treating patients at his private dermatology practice in East Windsor, New Jersey, Dr. Bagel serves as Senior Attending Physician at the Princeton University Medical Center and Director of the Psoriasis Treatment Center of Central New Jersey.   He is also a three-term member of the National Psoriasis Foundation’s Medical Advisory Board.  What investigational treatment for psoriasis is he currently studying?  And what does he wish more psoriasis patients knew?  Check out our insightful interview below.

1. What led you to focus your research on psoriasis?

I started studying psoriasis when I was resident at Columbia-Presbyterian in 1982-1985. At that time I would spend six months on in-patient service with 30 hospitalized psoriatic patients who would stay in for treatment for a month.   And I realized the burden of disease – the psychological, emotional and physical impact of this disease on people.

So when I opened up my private practice in 1985, I decided that psoriasis treatment and care of psoriasis patients would be a major part of my professional career and so I started seeing a lot people with psoriasis.  I started doing research in 1992 and then just kept working with pharmaceutical companies and developing our own protocols for research into the treatment of psoriasis, trying to find better treatments, safer treatments, more effective treatments.

2. Tell us about some of your most recent clinical trial findings.

The most recent clinical trial I’m doing as of today is IL-17 receptor antibodies with Amgen that is remarkable, using subcutaneous injections once every other week.   People are getting clear within 2-4 weeks, so it’s really a quite effective treatment.  I mean, obviously we don’t know [everything yet], but so far it’s been good at our facility, and the data I’ve read about it seems to be pretty good.  So I think it could take the treatment of psoriasis to another level in the sense that over half the people will probably clear and probably 85% will have a very effective level of clearing.  So it’s going to take it to another level of clearing given what existed before.

3. Speaking of what existed before, what current treatments are most effective in your experience?

Well, we still use phototherapy, but people have to come in three times a week for about 12 weeks. It works about 75% of the time, but people only stay clear for about six months maybe 75% of the time.  So in the end it only works well for about 50% of the people.  But it’s totally safe, so therefore the benefit ratio is high.  We also do all the biologic agents, like Enbrel and Humira and Stelara, and they’re quite effective treatments.

In fact, Enbrel and Humira are FDA-approved for the treatment of psoriatic arthritis as well – and up to 25% of people with psoriasis have psoriatic arthritis.  So it helps the arthritic component of psoriasis as well.   So we do use the biologics, although sometimes we have to tweak them with some systemic therapies.   Sometimes we use cyclosporine, sometimes we use methotrexate.  But the treatment of psoriasis today is certainly a lot better than it was say 10 years ago.

4. Do you have any dietary recommendations for psoriasis patients?

I think diet helps, but I don’t think diet necessarily clears psoriasis for very many people, if any.  But we know that psoriasis is associated with the metabolic syndrome, and many patients are obese and have diabetes, which are inflammatory triggers.  I think patients that eat a low-inflammatory diet – with more fish like mackerel, salmon or anchovies, and less red meat – tend to be better.  Staying away from fatty foods like animal fats, and eating more vegetable fats like nuts, tends to be helpful.  Also, I do think that weight loss tends to help people with psoriasis.  The other culprit is alcohol.  Alcohol is not good for people with psoriasis.

5. What is something you wish more psoriasis patients knew?

I wish more psoriasis patients knew that there are physicians providing effective care for psoriasis.  For instance, today I had a young woman who was 23 years old.  She came into my office with psoriasis covering about 20% of her body.  She’d been to three dermatologists before me, and two of them told her there was nothing they could do about it, and she should learn to live with it.  So I wish there was more education for people with psoriasis to know there are dermatologists or psoriasis caregivers who are interested in the treatment of psoriasis – and a better way of connecting people with psoriasis with the physicians interested in treating psoriasis.


The Five Different Types of Psoriasis

Posted November 1st, 2012 by

A photo shared by one of our members, Lissa, who has plaque psoriasis and guttate psoriasis.  Click to read her story!

On Monday, we recognized World Psoriasis Day on our blog, and today we’d like to dig a little deeper into this lifelong autoimmune condition, which can cause skin lesions on almost any area of the body as well as psoriatic arthritis.

Did you know that there are several types of psoriasis, and that they can have very different presentations?  Here’s a quick primer on the five main forms, none of which are contagious.

Plaque Psoriasis
The most common form involves reddish lesions topped with silvery white scales.

Guttate Psoriasis
A fairly common form marked by dot-like lesions that are small, red and scaly.

Pustular Psoriasis
Involves blister-like lesions and intense scaling, often on the palms and soles.

Inverse Psoriasis
Characterized by very red lesions where the skin folds (e.g. armpits, groin).

Erythrodermic Psoriasis
A rare, painful form marked by red, swollen skin and lots of dead skin shedding.

See photos of each type of psoriasis here.

Advanced Search Options for Finding Psoriasis Patients with the Same Subtype, Condition Status, Number of Years Since Diagnosis and More.

If you’re living with a form of psoriasis, find others like you in our growing community of more than 4,800 psoriasis patients. On our Patients page, you can search by type of psoriasis, years since diagnosis, Dermatology Life Quality Index (DLQI) score and more.We also encourage you to add your subtype(s) on your condition history page so that others like you can reach out and connect.

What treatments work best for your particular type – from light therapy to topical corticosteroids like clobetasol?  Trade notes and exchange support with those who can truly relate today.


Putting Psoriasis on the Map for World Psoriasis Day

Posted October 29th, 2012 by

Today, October 29th, is World Psoriasis Day, sponsored by the International Federation of Psoriasis Associations.  Here in the US, the National Psoriasis Foundation has created a special website – WorldofPsoriasis.com – for the occasion that illustrates the global nature of this chronic autoimmune disease, which affects 125 million people worldwide or nearly three percent of the world’s population.

WorldofPsoriasis.com's Interactive Map of Psoriasis Patients Around the Globe.  Click Each Red Pin to Find Stories, Photos and Videos.

Now those living with psoriasis and psoriatic arthritis can “get on the map” by adding a clickable pin for their location that shares their personal stories and photos.  The goal is to get psoriasis patients everywhere to proclaim “I have psoriasis” while also learning about others like them around the globe, such as Arvin O. Ravalo from the Phillipines, Saraswati Gautham from Nepal and Dr. Andres Felipe Jiminez Morales from Columbia.

What are the physical and emotional challenges of psoriasis?  Earlier this year, PatientsLikeMe interviewed four members who are blogging about life with psoriasis in order to shed light on this highly visible and often misunderstood disease, which affects as many as 7.5 million Americans and is the most common autoimmune condition in the US.  Check out our insightful interviews with:

  • Lissa of “Psoriasis Girl’s Point of View”
  • Alisha of “Being Me in My Own Skin”
  • Jessica of “Jessica and Psoriasis”
  • Joni of “Just a Girl with Spots”

Common Psoriasis Symptoms Reported by PatientsLikeMe Members.  (Click Through to See the Full PatientsLikeMe Condition Report.)

These four brave ladies are just the tip of the iceberg, however.  2,470+ patients are sharing their experiences with psoriasis at PatientsLikeMe – including how it affects their quality of life and what percentage of their body is affected – while 840+ patients are sharing about their psoriatic arthritis as well.  Get to know our growing psoriasis community and check out the results of our recent psoriasis patient survey about the impact of summer weather.  Also, don’t miss our upcoming blog post about the five different types of psoriasis!


Psoriasis Isn’t Contagious…But Awareness Is

Posted August 1st, 2012 by

Did you know that psoriasis cannot be transmitted through skin-to-skin contact – or any other type of interaction?

Psoriasis Awareness Month Is Sponsored by the National Psoriasis Foundation

August is Psoriasis Awareness Month, an annual event dedicated to highlighting the life-altering impact of psoriasis and dispelling the many myths surrounding it.  Beyond the misperception that it may be contagious, another major misunderstanding is that psoriasis is “just a skin condition.”  In fact, up 30% of people with this serious autoimmune disease will develop psoriatic arthritis, which can cause chronic pain and swelling in the joints.

Throughout 2012, PatientsLikeMe has been interviewing members who are blogging about life with psoriasis in order to shed light on this highly visible and often stigmatized disease, which affects as many as 7.5 million Americans and is the most common autoimmune condition in the US.  How have they managed both the physical and emotional challenges?  Check out our inspiring interviews with:

  • Lissa of “Psoriasis Girl’s Point of View”
  • Alisha of “Being Me in My Own Skin”
  • Jessica of “Jessica and Psoriasis”
  • Joni of “Just a Girl with Spots”

These four brave ladies are just the tip of the iceberg, however.  1,820 patients are sharing their experiences with psoriasis at PatientsLikeMe, while 730 patients are sharing about their psoriatic arthritis as well.  Get to know our growing psoriasis community and stay tuned for more psoriasis coverage – including the results of our new psoriasis patient survey and a recap of our exhibition at the American Academy of Dermatology Summer Meeting.


Year in Review with the National Psoriasis Foundation

Posted December 28th, 2011 by

Bruce Bebo, PhD, Director of Research and Medical Programs at the National Psoriasis Foundation

Last August, we recognized Psoriasis Awareness Month on our blog and shared some little-known facts about this autoimmune disease, which affects 7.5 million Americans.  Today we learn more about 2011 research highlights – as well as upcoming initiatives – surrounding psoriasis and psoriatic arthritis in our interview with Bruce F. Bebo, PhD, the Director of Research and Medical Programs at the National Psoriasis Foundation.

1.  What did the National Psoriasis Foundation learn from its various research projects this year?

One of the biggest things that the National Psoriasis Foundation learned from its research projects this year is that a large number of people with psoriasis may also have undiagnosed psoriatic arthritis. Our new survey, conducted in April and May 2011, revealed that psoriatic arthritis may be more common than currently thought. The data shows that nearly one in four people with psoriasis, which affects 7.5 million Americans, may have undiagnosed psoriatic arthritis—a type of inflammatory arthritis that affects the joints and tendons and is reported to occur in as many as 2 million Americans.

Learn More about Psoriatic Arthritis, a Painful Complication of Psoriasis

We also found from this research project that people with confirmed diagnoses of psoriatic arthritis were not diagnosed in a timely manner. Forty-four (44) percent of the respondents said they had symptoms for one year or more before being diagnosed, and 29 percent of people had a delay of two years or more for a diagnosis. Early diagnosis and treatment of psoriatic arthritis is vital to prevent or slow joint damage.

2.  Why are your guidelines for pregnant and lactating women with psoriasis important?

These guidelines are important because treating psoriasis in women who are pregnant or breastfeeding presents special challenges due to the potential risks and side effects of certain medications. Also, because of the ethical concerns of placing this patient population in clinical trials, there is just not that much data to guide treatment choices. Many of the currently approved psoriasis medications could have adverse effects on the developing fetus, so care must be taken when choosing a treatment approach. There is also a lack of research to determine the effects of medications on infants who are breastfeeding.

3.  Tell us what research initiatives and plans the Psoriasis Foundation has for 2012.

In 2012, the National Psoriasis Foundation will continue to make finding a cure for psoriatic diseases its highest priority by increasing our investment in biomedical research.

This year, we will invest $1.7 million in research grants to scientists studying psoriatic diseases. We focus our investment on projects that have the highest likelihood to advance our understanding of psoriatic diseases and find a cure. The Foundation also awards Fellowship grants that provide resources for the best and brightest clinical scientists to study psoriasis under the guidance of an established research mentor. By doing this, the Foundation hopes to promote more young, promising clinical scientists to pursue a career in psoriasis research and patient care.

Find Out About the National Psoriasis Victor Henschel BioBank

Other research initiatives of the Foundation include the National Psoriasis Victor Henschel BioBank, a collection of biological samples and clinical information used by qualified scientists to further the field of psoriasis genetics. In 2011, we received our 2,000th DNA sample and were able to begin releasing these biological samples to three researchers who are studying psoriasis and psoriatic arthritis. We will expand this project in 2012.

4.  How do the holidays affect psoriasis and psoriatic arthritis?  Any tips?

Psoriasis and psoriatic arthritis can often be exacerbated by stress, and many people even report that stress is a trigger for their psoriasis flares. The stress and excitement of the holidays could worsen these diseases for some people. Additionally, the cold, dry air and winter weather during the holiday season can worsen many people’s psoriasis.

During the holidays, try and keep stress at bay by practicing stress reduction and relaxation. Some people benefit from participating in activities that help reduce stress, including: breathing techniques, meditation, yoga, relaxation techniques and regular exercise. Also, try and get enough sleep and eat well to keep yourself healthy during the holidays. Experts suggest that during the winter it is best to moisturize constantly and use lukewarm showers, rather than hot ones, to keep skin hydrated.


Get Healthy for Good: An Interview with Catie Coman of the National Psoriasis Foundation

Posted October 7th, 2011 by

Catie Coman, Director of Communications, National Psoriasis Foundation

In August, we recognized Psoriasis Awareness Month on our blog and shared some facts and figures about this autoimmune disease, which affects 7.5 million Americans. One of the statistics we shared is that psoriasis often occurs in conjunction with other serious health conditions, including diabetes, hypertension, heart attack and obesity.

What these conditions share is that they can often be improved by reaching an ideal body weight. But losing weight – and maintaining it – is easier said than done. That’s why the National Psoriasis Foundation has launched the Healthy for Good campaign. Here’s what Catie Coman, Director of Communications at the National Psoriasis Foundation, tells us about this new online program.

1. What is Healthy for Good, and why should patients join in?

Healthy for Good (www.healthyforgood.org) is program designed to help people lose weight, while raising funds for a cure for psoriasis and psoriatic arthritis. It’s unique in that is uses a public platform and the fundraising tactic of “friends asking friends” to help people reach their goals.

Forty percent of people with psoriasis have metabolic syndrome, a cluster of conditions such as high blood pressure, diabetes and abdominal obesity. By joining Healthy for Good, they’ll get tools to stay motivated, lose weight and reduce their risk factors for these associated conditions. They’ll also be able to support research to find a cure for psoriatic diseases.

2. How will Healthy for Good reduce the risk factors for these conditions?

Healthy for Good may reduce the risk factors for these other serious conditions by providing participants with a platform to lose weight safely and set achievable goals. Healthy for Good supports a weight loss goal of up to two pounds per week. Participants will make a commitment to eat right and exercise—and reduce their risk for other serious diseases while they get healthy.

3. How is this program different from other health and fitness campaigns?

First, it gives people a chance to go public. Research shows that people are far more likely to achieve a goal when they put their reputation on the line—by publicly announcing their intentions. Healthy for Good helps people be accountable by giving them a platform to broadcast their commitment.

Also, it will help people stick to their resolution by asking others to support their efforts. For every pound that someone commits to lose, they will ask loved ones to donate $1, $5, $10 or more to help the National Psoriasis Foundation find a cure for psoriasis and psoriatic arthritis.

Participants will track their progress each week, and the Healthy for Good tracker will calculate their overall progress toward their goal. In order to help people stay motivated, each person who meets their weight-loss and fundraising goals will be entered to win prizes.

4.  Is Healthy for Good only available to psoriasis patients or can anyone join?

Anyone can join Healthy for Good. People without psoriasis and psoriatic arthritis can use this program to overcome weight loss obstacles and lose the pounds, while helping others at the same time. And it’s a great way for people with psoriasis and psoriatic arthritis to get healthy, reduce their risk of other serious associated diseases and raise funds to find a cure.

PatientsLikeMe member mcotter



What Do You Know About Psoriasis?

Posted August 22nd, 2011 by

August Is Psoriasis Awareness Month

Last week, we told you about the Spotlight on Psoriasis and Psoriatic Arthritis Online Film Festival and how you could participate. But for those of you who don’t have psoriasis and don’t know much about it, we wanted to tell you a little more about this chronic condition as August is Psoriasis Awareness Month.

An autoimmune disease affecting as many as 7.5 million Americans, psoriasis was recently in the headlines when reality star Kim Kardashian was diagnosed with the condition after developing red patches on her legs and torso. As she soon learned from her doctor during an episode of “Keeping Up with the Kardashians,” the disease is a lifelong one, and there is no cure. Her story also demonstrated the tendency for psoriasis to run in families, as her mother Kris Jenner also has the condition.

Like many people, Kardashian’s first reaction to the diagnosis was one of embarrassment and self-consciousness. Many people with psoriasis report that they have limited social activities, dating and the use of public swimming pools due to the often highly visible condition. In fact, a 2009 survey by the National Psoriasis Foundation found that nearly three-fourths of respondents say that psoriasis has had a negative impact on their quality of life.

The goal of Psoriasis Awareness Month is to highlight the life-altering impact of psoriasis and psoriatic arthritis and dispel the many myths surrounding it. With that objective in mind, here are a few quick facts to raise your knowledge.

Did you know that…

  • …psoriasis is a serious autoimmune disease that causes the skin to crack, itch and bleed?
  • …up to 30% of people with psoriasis will develop psoriatic arthritis, which causes pain and swelling of the joints?
  • …psoriasis is not contagious and cannot be transmitted through skin-to-skin contact?
  • …psoriasis often occurs with other serious health conditions, including diabetes, hypertension, heart attack, obesity and depression?

One of the best ways to better understand psoriasis is to get to know someone with the condition. Here at PatientsLikeMe, 318 patients report psoriasis, and 176 patients report psoriatic arthritis. Women are disproportionately affected, representing 69% of our psoriasis members and 82% of our psoriatic arthritis members. Across both conditions, one of the most commonly reported treatments is methotrexate (Trexall).

Learn more by checking out the profile of one of our psoriasis members today. Also, don’t forget about the Spotlight on Psoriasis and Psoriatic Arthritis Online Film Festival. Starting Tuesday, August 30th, anyone can watch and vote on submitted videos at www.psoriasis.org/pam.


Put Your Psoriasis Story on Video

Posted August 15th, 2011 by

The most common autoimmune disease in the US, psoriasis affects as many as 7.5 million Americans. Yet many people think it’s just “a skin thing.” To help debunk this misunderstanding and show all the ways psoriasis impacts one’s life, the National Psoriasis Foundation is holding the first-ever film festival for psoriasis and psoriatic arthritis, a painful joint condition that up to 30 percent of people with psoriasis develop.

Spotlight on Psoriasis and Psoriatic Arthritis Online Film Festival, August 30th - September 6th

The Spotlight on Psoriasis and Psoriatic Arthritis Online Film Festival invites you to show what life is really like with psoriatic disease, including all the ups and downs, frustrations and realizations. Not sure how to get started? You may want to think of a genre for presenting your story first. The festival invites submissions in seven different categories: action, youth, animation, horror, comedy, documentary and music video.

All videos submissions are due on August 28, 2011. Two semi-finalists will be chosen in each category for online voting by the public, beginning on August 30, 2011. Anyone with any condition can watch the videos and vote on their favorites. Then on September 6, 2011, the video with the most online votes across all seven categories will be named the Festival Grand Prize winner and take home a $500 Visa gift card.

For festival FAQs, rules and regulations, and to submit your video, visit www.psoriasis.org/pam.