My experience with psoriasis started innocently enough in my mid-20s when my scalp became covered. At that point I remember thinking about the "heartbreak of psoriasis" and chuckling. After all, how rough could it be? Some extra money for special shampoo and a little unsightliness didn't seem to add up to "heartbreak." By my late 20s the psoriasis moved to my shins, and by my early 30s it had moved to my knees and elbows. Still, I was dealing only with spots, and it seemed that this unwelcome intruder would be kept at bay. I was wrong.
By the time I was 40 my psoriasis had left no significant area below my neck untouched. I am grateful that my face and chest are mostly clear. My arms, legs, back, and buttocks are write-offs. Most recently, scaling has appeared on the back of my hands, an area previously untouched except for the looking fingernails that I keep trimmed as close to the skin as possible. Psoriasis's kissing cousin - psoriatic arthritis appeared at age 40, adding very sharp pain m the existing lower-level pain and itching that has affected my skin for 20 years.
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| Dealing With Psoriasis |
As the psoriasis on my body became increasingly worse, my scalp cleared and has remained mostly clear to the present. Trust me, the trade off has not been worth it. Most readers with serious psoriasis will not be surprised to hear about the relief m my scalp. This is a mysterious disease that moves around without much rhyme or reason. One day you can be excited that a particularly nasty patch disappears almost overnight and disappointed the next day when a previously clear area sprouts a new lesion. This unpredictability adds an additional component of stress to the psoriasis experience.
Most human beings strive for predictability (consistency) in their lives and often do well when facing adverse experiences once a degree of control is established. Psoriasis is an intruder that mocks predictability and control.
As a chronic disease, psoriasis remains stubborn in the face of treatment. Treatment has provided me with a degree of comfort and some manageability, but no indication that I will ever beat the disease. Within the realm of treatment I have been fortunate. My dermatologist is not only a superb doctor, but also a truly decent person whose compassion and attentiveness have provided me with an immeasurable degree of psychological support. I am also fortunate to live in an urban center that provides me with ready access to the best treatment resources available.
So, have I tried to fight back? Sure. It all started with topical ointments that, from the beginning, had only limited success. Although time consuming and greasy on my clothes, the ointments would have been a small price to pay had they only worked. The second step included PUVA (psoralen plus ultraviolet-A) and UVB (ultraviolet-B) treatments. At this point treatment moved past the annoying to the truly disruptive level. Hundreds of trips and hundreds of hours under the lights initially helped considerably, but I was soon faced with the law of diminishing returns. Though light treatments are manageable, they do present challenges. I was usually left with a feeling of prickliness, and on several occasions found myself burned after pressuring nurses to give me more light than they thought advisable.
PUVA also presented a particularly nasty surprise early on: the infamous "PUVA itch" from UVA (ultraviolet-A) light. Anyone who has experienced this knows that "itch" doesn't quite cover the experience. I once suffered a very long weekend with pain that almost drove me to the emergency room. This problem was knocked out with an anticonvulsant drug, another modification added to my already complicated treatment protocol.
By this point, I had turned into a sun worshipper from someone who had previously found that time in the sun constituted a waste of time (to say nothing of being potentially dangerous). Several summers provided an uplift in spirit as a couple of days in the sun would almost completely clear my skin. However, consecutive days in the warm sun are rare occurances in Nova Scotia and eventually even those exposure, were met with diminished returns.
So, I was onto methotrexate (Rhenmatrex) treatment, a step I embarked upon only after careful consultation with my dermatologist. Again, this initially worked well, but was not without side effects. Although I never became grossly ill with this anticancer drug, the day following my weekly treatment was usually accompanied by low-level nausea. Eventually, this resulted in a kind of conditioned nausea such that I would begin feeling ill before taking the tablets and often found myself gagging when swallowing them (readers should note that many people are successful in raking low-level doses of methotrexate without the nausea I experienced).
Ultimately, I again met with diminishing returns, necessitating an increased dose. As my dermatologist and I began considering options after blood tests gave rise to concern about liver function, a choice was made for us. I developed a nasty case of mucositis, an infection of the interior of the mouth that resulted from my lowered immune response. My run with methotrexate ceased.
Well, this seemed like the end of the road for treatment, and I resigned myself to managing the disease as best as I could. And, despite what I have already said, this was not the most crushing realization life had provided. Life is good, and psoriasis is not so debilitating that I would allow it to steal my entire quality of life. I add this in case the portrait I have painted so far leave, readers with less severe conditions fearing bleak futures. This is simply not the case, a feeling with which I suspect that others with even more severe conditions than mine would agree. I concluded that ongoing management would allow me to continue with a full life, and to this premise I added the strong message that I should accept the things I cannot change and realize that others face much worse conditions.
Accepting the things we cannot control does not equal giving up. During the last year much media attention has focused on the optimistic view that scientists and dermatologists are generating a number of emerging experimental treatments. When my dermatologist asked if I wanted to be involved in a clinical test of one of these treatments, I jumped at the chance. I am currently in the middle of a "double-blind" trial that involves weekly injections. The agent injected is called alefacept (Amevive) which hopefully will respond with a methotrexate-like effect while bypassing the nasty nausea.
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| Dealing With Psoriasis |
Most importantly, this biological agent battles the T-cells responsible for the rapid growth of the epidermis without challenging the rest of the immune system (such as is the case with methotrexate). The double-blind strategy is an experimental method whereby some patients are injected with alprocet and others get a placebo (in this case a saline solution). It is too early yet to determine whether it is working for me or even if I am getting the real agent (neither I nor the doctor running the trial knows which of the two I am getting, hence we are "doubly blind"). The last part of the trial involves everyone getting the agent. I may not know if I will experience a positive result until then.
I am hoping for a good outcome, but if it doesn't work I remain optimistic that it is only a matter of time before something is discovered that will help. Until then I firmly maintain that my psoriasis is not who I am, and that it will not dictate how I live my life. To find out more, you can check out Dealing With Psoriasis.