Living With Psoriasis

ryFor the average person who is unfamiliar with or does not suffer from psoriasis it is merely regarded as a skin disease. A mere inconvenience like the common cold some may think. For those that suffer from the disease, especially individuals who have moderate to severe conditions, it can be best summarized by a poster I once saw hanging in a booth at a Family Practitioners convention in Kansas City, Missouri back in the 1980’s. It read something to the effect that Psoriasis never killed anyone, but for many that live with it, it can be murder.

I first noticed the lesions on my scalp back in the early 1970’s when I was 15 years old. Longer hair was the fad back then, so it wasn’t as noticeable as it might have otherwise been, but to me I was always aware of its existence. It grew very thick and I was constantly picking at it, pulling out large clumps with hair attached until my scalp would bleed.

Eventually the lesions would spread to some of the more common areas such as the knees and the elbows making it embarrassing to wear short sleeve shirts and shorts in the summer time. Equally troublesome was the fact that as a 17 year old, dating was starting to become a part of the equation.

As the years passed lesions would start to pop up everywhere from my lower back to my forearms, inside my ears and even under my fingernails. At this time I decided to seek medical attention. The doctor recommended a daily routine of applying a moisturizing cream on each of the lesions, followed by salicylic acid ointment and finally a topical steroid. This intern was to be covered by an occlusion where as I would wrap my extremities in plastic wrap and for my upper torso I would wear a trash can liner. For my scalp I applied a liquid OTC drug and wore a bathing cap. This would become my nightly routine for the many, many years. I was able to skip an application once every four or five days, but if I were to miss two days in succession the psoriasis would come back like wildfire. It was also uncomfortable and difficult to sleep and I remember many a summer night living on the second floor without air conditioning waking up in the middle of the night having to rip everything off.

Eventually, prolonged usage of the topical steroids would lead to severe side effects. My skin would thin causing my knees to bleed just from kneeling on a kneeler at church. You can only imagine the injuries I sustained playing sports. Twenty-five years later since being off the steroids my skin has still not completely recovered and I also have stretch marks from the medication as well, causing my new family doctor whom I just visited most recently to ask if I had a weight problem earlier in life.

After experiencing these side effects I went to a new physician who took me off the treatment plan immediately. By eliminating the medication that my body had grown accustomed to for so many years, I experienced what they referred to as the rebound effect. The psoriasis began to spread everywhere. My hands became so raw I could not reach into my pocket to pull out my car keys. My ankles swelled up and with the mercy of God the only place the psoriasis did not spread to was my face. Before long my body was over 60% covered and I was forced to be admitted into the Hospital. Yes my friends, for a skin disease.

I would spend 14 days in the Hospital, where I would take baths in tar solutions, apply all kinds of creams and ointments and 5 days a week go down for light therapy.

The light therapy (PUVA) was a savior and would keep my skin almost completely clear with a once a week visit to the local Hospital. That lasted for about eight years until as with many medicines or treatments my body adapted and the treatments were no longer effective. Also like many medications I experienced many of the side effects including a body that is now covered in sun spots and three bouts of squamous cell skin cancer which I am certain to experience more in my lifetime before it is all over.

My next course of action was a pill which I took for a little over a year, because it was only approved for short term usage due to the negative effect it has on one’s liver and by some miracle right around this time biologics were first being introduced and approved for the treatment of psoriasis and psoriatic arthritis (oh yea, did I mention that I suffer from that as well) For the past thirteen years I have been self-injecting the medicine into my thigh once a week and report my skin has been remarkably clear for all this time.

My skin is still thin with severe scar tissue on my knees and my stretch marks will never go away, neither will the sun spots and I need to have my skin checked by my Dermatologist every 6 months for the continued possibility of skin cancer recurrence. And as far as the biologic I am on; it is from the same family of drugs that just helped contribute to the death of Eagles founding member Glenn Frey by weakening his immune system causing him to come down with pneumonia. Having recently turned 60 years of age, I now have this concern to worry about as well.

Above are the treatment methods I have gone though over the past 45 years I have lived with the disease and effects they have had on my body. I don’t spend much time discussing the psychological ramifications or the embarrassment it has caused me over the years. The effect it has had on my relationships or my overall mental health. The need to leave work once a week for my light therapy or the hours I spent each night applying medicine and plastic wrap. The periods of moodiness or anger I would experience when I would have occasional flare ups and have to go to my PUVA treatments three times a week to get it back under control.

Through all this I consider myself to be one of the lucky ones. Not everyone reacts positively to treatments and for some there is no relief. Remaining positive and always having hope is what helped me through and will continue for my remaining years.

For those that have psoriasis, seek treatment. There are so many options out there today, many more than there were 45 years ago when I was first diagnosed. For those that do not, understand that it is NOT just a simple skin disease. It can be physically, emotionally and psychologically debilitating. The long term effects from the disease and its methods of treatment can impact your life forever and although it may have never killed anyone, for some… living with it can be murder.

1 Comment

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