Psoriasis is a chronic skin condition characterized by inflamed and scaly skin with periods of outbreaks and remission. It is considered a lifelong disorder with no present cure although there are many ways to treat the symptoms. Psoriasis can be an extremely difficult condition to deal with considering there may be pain involved as well as the risk of multiple co-morbid conditions. Psoriasis affects up to 125 million people worldwide including men, women, and children.
In recent weeks we have talked with a dermatologist about psoriasis to get a doctor’s medical viewpoint of this skin disease. In this post we will be getting the firsthand patient perspective from someone who has been living with psoriasis for many years. One of our MySkinCareConnection members, known as JRonman62, has graciously allowed me the honor to conduct an interview with him about what it is like to live with psoriasis and how he copes.
How long have you had psoriasis? At what age were you diagnosed with it?
I have had psoriasis for 20 years now. I had a massive outbreak not long after finding out that my then wife was pregnant with our second child. That would mean age 28.
What were your first symptoms leading you to see a doctor?
My dad has had psoriasis for as long as I can remember. So, I knew what it looked like. My first symptoms were the classic dry scales. Along with this I had dry cracked skin and the associated pain. The reddened dry skin and scales just kept getting larger and eventually merged with close by affected areas.
What was your emotional reaction to being diagnosed with this chronic skin condition?
My first reaction was anxiety then depression. I had such a large out break and it was so uncomfortable and looked so terrible. I had a defeatist attitude. As I had said above, my dad had it forever and I thought that it would never go away even with the best treatment at the time. Plus, I was worried about the underlying cause of my outbreak. It made me feel so uncomfortable and hurt so much. The depression kicked in when I realized that it would be a lifelong battle. Also, the treatment took so long to give me relief.
What is the most difficult thing to cope with in having psoriasis?
There are a number of things that I have to cope with. One is the physical discomfort. I remember having it on the palm of my hands and could not work because it was so painful. That is paramount. However, a close second is the embarrassment of my physical appearance. The looks that I would get from people made me just want to disappear. I remember one day at work my supervisor called me in her office and told me about the complaints she was getting from my coworkers about me leaving flakes wherever I sat. At the time I was using moisturizer at least 3 times a day and I could do no more. I felt very isolated, embarrassed, and hurt. After all, I am an RN and would have thought that my coworkers would have shown understanding and empathy. Not so.
Thirdly, I have had to deal with the depression that kicks in with each major outbreak. I have learned that it takes a good month to start seeing improvement from an outbreak. So, I relive the pain, embarrassment, and isolation each time.
Over the years have you identified any triggers for your psoriasis?
Triggers that I am aware of are stress, infections, and at times the treatment itself. I was on Enbrel for a few years and it was working well. Then one day for whatever reason I developed congestive heart failure. This was accompanied by literally head to toe outbreak. There was not a part of my skin that wasn't affected. My fiancé was an angel. She would every day basically debride my body. I was literally scaling over every day. I later found out that 8% of people who are on Enbrel develop congestive heart failure.
What treatments have you tried? What worked for you and what did work for you?
I have tried so many ointments, injectible medications, and pills. The ointments took so long to start working that I did not feel that they were effective. Plus, it never did completely take away the psoriasis. The topical medications that I used were corticosteroids (there were several that I had tried over the years) but my psoriasis was so widespread that they were ineffective.
I had psoriasis in my scalp so I had to use medication that stayed on over night. I had to wear a shower cap then in the morning wash it out then comb out the scales. Also, I used Dovenex which is a derivative of vitamin D. I also have had PUVA treatments. This involves taking medication that enables your body to absorb more ultraviolet light. You are basically in a tanning booth on steroids.
After the treatment I would have to wear special sunglasses for the rest of the day. Two major side effects are skin CA and cataracts. So, time will tell if I get these. I was on Methotrexate a few years and it was very effective. It affects your liver so I had to get regular bloodwork to see if it was effecting my liver. Plus every year I would have to get a liver biopsy. I had to eventually come off of it because it was damaging my liver.
Other medications that were effective for a few years were Enbrel until I developed congestive heart failure.. Raptiva worked for a while but then stopped being effective. My current treatment has been working well. I take Methotrexate but now take the injectible form. By taking it this way the medication bypasses the liver. It does not ever take it completely away but it makes it very bearable.
What advice would you give to someone who is newly diagnosed with this skin disorder?
The advice that I would give people newly diagnosed with psoriasis would be to educate yourself. There are so many choices these days. Some are more effective than others. However they all have side effects. You need to pick the one that fits your lifestyle and what you are comfortable with as side effects go. I would surely advise people to seek treatment from a dermatologist. Having your PCP treat the psoriasis is not treatment. A dermatologist knows what best will treat your condition.
Plus, it would be helpful to have a good working relationship with that doctor as it is a chronic illness. I do believe that a support group can be very beneficial. You are not alone. There are many things that can be done to make it more bearable and you can get many ideas from people who are in the same boat as you. Lastly, I would not minimize the emotional toll that it takes. I would advise counseling if it does affect your mental health.
Any last thoughts? Is there anything you want the public to know about psoriasis?
Psoriasis is a lifelong condition. Seek treatment early from a dermatologist. Know your options as medications that are working can suddenly become ineffective. You may have to go back and forth on different treatments. Also, educate yourself of the side effects as they can be serious. Lastly do know that although psoriasis is a skin disease it can affect your mental health, your relationships with people, and psoriatic arthritis can be very debilitating. For the general public I would say YOU CAN NOT CATCH IT. It is not contagious. If someone you know suffers from it do know that although it affects the skin it can also affect many facades of a person. It is a lifelong battle.
Thank you to JRonman62 for helping to inform and educate others about psoriasis and what people can do to live better with this chronic skin condition. For more information about psoriasis please read our many psoriasis articles.