My Psoriasis Diagnosis Story

August is Psoriasis Awareness/Action Month in the United States. I’m up north in Canada, where it is apparently not Psoriasis Awareness/Action Month. However, as awareness/action knows no geographic boundaries, I figured it would be a good time to share my psoriasis story, before the month is over. Grab a tea, settle in, and let me tell you my story. 

Prelude to a Flare

Picture, if you will, the late 2000s in Ottawa, Canada. It is early spring, around Easter time and I am in my first year of grad school, finishing up the last course requirements for a Masters degree. I’m also working as a teaching assistant and things are ramping up because it’s exam time. I also have to decide on a thesis topic and I don’t really know what the fuck I want to do. It is stressful. I am also, for some reason, hosting a two week visit from my then-long distance boyfriend from the UK. So I’m also entertaining him, visiting museums in the Nation’s Capital and doing other touristy things. I don’t recall why we chose this point in my life for a visit, but I guess it made sense at the time. 

Anyhow, I’m stressed, I’m worn-down, I’m anxious about everything and trying to keep it all straight, and of course, I get sick. At first it is just a cold, then it’s a wicked sore throat, and then obviously strep throat. Never mind, we had a trip planned to visit my parents for Easter in a small town a 4 hour drive away and we can’t skip that. Or take a break. Or rest. I recall being so exhausted on the way back from the visit that I passed out in the passenger side of our rented car, hoping that this UK native didn’t forget how to drive in Canada. This is notable because I can hardly sleep in my own bed, let alone anywhere else. 

Mystery Spots

The boyfriend eventually goes back home and life calms down a bit. I am still recovering from what I believe was strep throat while chugging along with the rest of April. About a week after the symptoms calm down, I notice I have hundreds of tiny red bumps on my skin. What the fuck is this, I worry. I have never seen something like this before and definitely not on my own body. Google gives me too many options and none are comforting. Measles? Dermatitis? Change your laundry soap recently? No. I am also totally exhausted, but don’t see a connection between this and my skin. I make an appointment with my doctor. By the time I get in there, the tiny red bumps have turned into larger red bumps. They are slightly itchy. They are unsettlingly red. They are covering my whole body: my torso is the worst, but it’s also on my arms, legs, and most alarmingly, my face. I hate it and want it to go away. Doctor is somewhat puzzled, but offers the suggestion of guttate psoriasis. I get a throat swab to confirm I had strep. I am referred to a dermatologist and get in relatively quickly (in about a week or two). By the time I see the dermatologist, the large red bumps are now nickel to quarter-sized raised patches. While at that dermatologist appointment I become A Severe Case of Guttate Psoriasis and the other two dermatologists and an intern in the building are invited to take a look. I am told it is likely an immune response to the recent case of strep throat and it probably won’t go away soon. Well, fuck. 

Topical Adventures

I use the meds they prescribe – a smelly, greasy tar preparation that I am supposed to use at night, and a less-disgusting steroid cream for the daytime. I don’t remember the names of these meds, but I went through a ton of them because I had patches all over my body.  The tar-based one was especially awful. I was advised to wear a pair of pjs that I didn’t care about because it would stain everything that it came into contact. And boy, did it ever. It ruined bed sheets, towels, clothes… and it barely helped the psoriasis. I was also prescribed another, more expensive cream ($100+ not covered by my insurance) for all the patches on my face & neck. It was in a tiny tube and I quickly blew through it without seeing any real results. It is also worth mentioning that I have always hated slathering on any kind of creams, moisturizers, sunscreens, etc., so this regime in itself was annoying and yucky. Had it worked, I might have felt differently, but it didn’t. 

(Before you ask… I have few photos of myself during this time, save a couple of crappy webcam photos I took to show my out-of-town family and friends. They’re not great, so they’re not going on the blog right now. There was no Instagram, no selfies – I didn’t even have a cell phone at that point. And I probably wouldn’t have taken photos at the time anyhow, as couldn’t stand to look at myself. It is for the best.) 

At my follow-up appointment with the dermatologist it is apparent that the initial approach is not working. Further, I am also fairly depressed at this point. I had low-self esteem and zero body confidence before the diagnosis, and now I am in a state of deep self-loathing. I pretty much stop going out, only leaving the apartment for school, errands, and appointments. I am exhausted all the time. The weather is getting warmer and I am wearing hoodies and jeans everywhere I go. Ironically, the dermatologist tells me this is probably the worst thing I can do – I should be getting sun. I am prescribed UVB phototherapy as the next step. 

Lighten Up Already

If you haven’t had UVB phototherapy, it is a trip. You get naked in front of a nurse, put on weird sunglasses, and stand in a special tanning booth while they zap you with a short dose (e.g. 30 seconds) of intense light. It is followed by the application of a ton of moisturizer. I did this 4-5 days per week for about 2 months. I rarely could handle 5 days per week – by the end of the week I felt like I had a strange full-body sunburn. They told me that it is common to need a break after several consecutive days of treatment. Each visit took at least an hour and it was a pain in the ass to visit the clinic every day, but to my shock, it worked. The patches first lost the redness & scales, then flattened, then gradually faded into dark brown “stains” on my skin. Some patches were stubborn and never really went away, but 80% of it did. And I think it actually helped my mood a good deal too. By the time September rolled around, I was definitely not cured, but things were much better. 

To Be Continued?

I wish that was the end of the story. After the initial outbreak had settled down with the course of phototherapy, I continued to have a few lingering patches that lasted for months. When I say patches, I mean 2-4” areas across my stomach, back, or thighs. It wasn’t severe enough to subject myself to phototherapy, so it was back to the steroid creams and regular moisturizing. I began to notice a strong relationship between my stress levels and flare ups. I noticed a relationship between what I ate and flare ups. I didn’t always adjust my behaviour accordingly, but at least I was noticing.  

After over a decade of living with this disease, it is fortunately less severe. I get small (1-2”) patches on my torso, as well as my arms and legs. I also tend to get patches on my scalp in the winter. It still takes that general “guttate” appearance – a scattering of small dots that spread into larger patches if I don’t deal with them right away. Currently, I’m using Betaflam patches on the active areas, Dovonex cream on the “healed” areas, and moisturizer whenever I can handle it. About 10 years after the initial guttate psoriasis diagnosis, I was diagnosed with Psoriatic Arthritis (PsA). I will get into that in another post, but interestingly, my psoriasis has been less severe since I was diagnosed with PsA. I still dread a huge flare up like the first one, but at least I’m more equipped to deal with it than was back then. Live and learn. 

What was your diagnosis like? Has your disease changed over the years? I’m curious about the experience of others, so please leave me a comment or drop me an email if you feel like commiserating.