My Psoriatic Arthritis Diagnosis Story

I had intended to post my psoriatic arthritis (PsA) origin story on October 19th, National Psoriatic Arthritis Day in Canada. Ironically, I missed the date because I was recovering from an allergic reaction to medication to treat it. Not that I want to extend 2020, but just pretend it is October 19th for a bit. 

My Psoriatic Arthritis Diagnosis

My PsA diagnosis story isn’t as dramatic as the situation I had with psoriasis.  I have been dealing with symptoms of PsA for a while. While I can’t exactly pinpoint when it started, I know I had years of a “different” kind of ache & pain before I took steps to be diagnosed. In a pattern I have repeated throughout my life, it took a near-breakdown to actually propel me to get a diagnosis. 

I was coming off a wellness kick at the time I was diagnosed. In an attempt to deal with burnout from a high-stress job, then-undiagnosed PTSD, and the disintegration of a long-term relationship, I had hit the gym. Healthy, right? I was going to the gym 3-4 times a week doing weightlifting with a personal trainer who I had hired at great cost. I don’t have personal trainer money, but I had never trained before, had some specific goals, and wanted to avoid injury, so I dipped into my savings. I had lost a bunch of weight and was getting toned. People were telling me I looked great while I felt like complete burnt-out shit. Like, worse than before I had started exercising. After the work out endorphins wore off, I would feel like I got hit by a car. The general ache and fatigue I had attributed to “life” had turned into burning joints and severe bouts of exhaustion. I was in my mid-30s and it was apparent that something was wrong. When I told my trainer about the pain, she told me it didn’t sound like normal post-workout/recovery aches and to get it checked out. I had missed a number of days of work because I could hardly get out of bed at times, so off I went to my doctor.

While I had a decent family doctor, who had never bothered me about my weight or told me to “lose weight” in response to any medical complaints, I have a feeling I wouldn’t have been taken as seriously had I brought up “aches, pains & exhaustion” when I was 30-40 lbs heavier. Once I explained my symptoms, my doctor immediately referred me to a rheumatologist. I’m not a doctor, but I imagine my previous diagnosis of psoriasis probably helped connect the dots. At the time, I was most concerned with the pain in my hands. I had lingering burning pain in several joints of my hands on good days, which would flare into pain so bad that it kept me from working out, doing my hobbies, and even simple things like holding a pen. It would keep me up at night and my joints would be stiff and swollen in the mornings. Fortunately, my rheumatologist ended up being really great. Some bloodwork, x-rays, an ultrasound, and my symptoms pointed to PsA. She gave me some nonsteroidal anti-inflammatory drugs (NSAIDs) to start. Though it didn’t stop the disease or the fatigue, it dealt with the pain enough that I could get on with my life for the time being.

Fast forward a couple years, and I am still taking NSAIDs when I have pain, but I am having more and more flare ups. Taking more and more NSAIDs, which are giving me gut-rot. Around October 2019, I had a major flare up where I could hardly move one morning, and this pain lasted a few days untouched by the NSAIDs. It was pretty terrifying. I have always valued my independence and here I was barely able to hold a phone or wash my face. It occurred alongside several huge stressers in my life and I don’t think it was a coincidence. For better or worse, it was part of an overdue reckoning regarding my physical and mental health that I am still dealing with now.

This development, along with more diagnostics, lead me to the point I am at now, where my doctor has moved me to the next step of disease-modifying antirheumatic drugs (DMARDs). I recently tried Sulfasalazine. Given my general apprehension regarding medication and denial that the disease was progressing, it took me a while to wrap my head around starting a drug like Sulfasalazine. I also have a family history of autoimmune disease, and watching my family members go on different treatments and have their conditions get worse was not encouraging. The idea of all the joints in my body irreparably falling apart isn’t appealing either though. 

Anyhow, after I psyched myself up enough to start Sulfasalazine, it turns out that I am allergic to it. After a few days on a low dose, I experienced extreme itchiness, skin flushing, headaches, burning watery eyes, zero appetite, nausea, weird bumpy “hives,” culminating in an evening with a badly swollen mouth and face. I plan to make an in-depth post about this, since I kept track of symptoms as they were popping up. Anyhow, I could still breathe and my rheumatologist had given me the heads up about possible allergies, so I didn’t go to the hospital. Hospitals are the last place I want to be right now, since COVID-19 is surging again in Ottawa. I took a bunch of antihistamines, stopped the medication and tried to chill. I called some folks so they knew what was happening in case it got really bad. The swelling went away over the next few days and the skin problems calmed down. I don’t know how long it takes for Sulfasalazine to leave one’s system, but I am still having bouts of itchiness, headaches and lack of appetite/nausea a few weeks later. 

My rheumatologist has already prescribed me Methotrexate to try next, but suggested I get “back to normal” before starting it. I am going to wait it out for another week. I have seen the effects of Methotrexate on some family members and I would be lying if I said I was looking forward to this med. At the same time, I know a few folks who have been really helped by it, so I am trying to be optimistic. To be continued, I suppose.