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shortness of breath led saskatchewan man to rare disease diagnosis

microscopic polyangilitis is a rare autoimmune disease that has a 5-month survival rate if left untreated.

by as told to robin roberts

apr 12 2022

3 minute read

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just in time: fatigue led sask man to rare disease diagnosis

rick light's microscopic polyangilitis diagnosis came just in time. supplied

rick light is a retired gas service technician with saskenergy. in 2019, he saw his doctor with complaints of fatigue and shortness of breath. tests showed that he had a rare autoimmune disease known as anti-neutrophil cytoplasmic antibody (anca)-associated vasculitis. there are three main types: microscopic polyangilitis (mpa), which can cause kidney inflammation, skin lesions and nerve damage; granulomatosis with polyangilitis (gpa) — formerly known as wegener’s granulomatosis, which damages blood vessels in various tissues, usually in the lungs, kidneys and upper respiratory tract; and eosinophilic granulomatosis with polyangilitis (egpa), typically affecting the lungs and gastrointestinal tract. light has (mpa). if left untreated, mpa has a five-month survival rate. here is his story.

this interview has been edited for length and clarity.

i had never heard of anti-neutrophil cytoplasmic antibody (anca)-associated vasculitis [a group of autoimmune diseases that causes inflammation of, and damage to, the small blood vessels] before i was diagnosed in october 2019. i didn’t really feel sick; i just didn’t feel right. i felt fatigued, and i sometimes had shortness of breath, but it usually didn’t last long.

i saw my doctor, who sent me for blood work. when he called with the results he said, “i think the lab screwed up on your blood work, your readings are all over the place. would you mind going back and getting it done again?”

so i did, and [based on those results] he referred me to a kidney doctor (nephrologist), who did more blood work.

the following morning, i was sitting at home having coffee when i got a call from regina general hospital, asking me to be in the emergency department by 10:30 that morning — they said i would be admitted. more tests were done and then the doctors told me i had this condition called anca-associated vasculitis. they said they weren’t really sure what caused it, and that it’s actually quite rare.

my glomerular filtration rate [a blood test that checks how well your kidneys are working] was down to 17, and it should be up around 75 at my age — a rate of 17 pretty much means you have severe kidney disease. this was all a result of the anca vasculitis.

i was in the hospital for about a week, and they put me on some drugs — an infusion of chemicals to hopefully bring the vasculitis into remission. we tried a bunch until we got the right combinations. the worst was prednisone, which caused a lot of swelling and shaking. i also started getting bad cramps in my legs in the middle of the night. when i was referred to a different specialist she reduced the dosage, and i’ve been fine ever since.

but this kind of vasculitis can also affect any organ in the body, and for me, it was the kidneys and a bit in my lungs. i have scar tissue in my lungs, which the doctors keep track of.

my kidneys aren’t going to get any better

i’m 74 and retired, and i’ve been in remission for almost two years [there is currently no cure]. i get an infusion of rituximab [a monoclonal antibody medication] once every six months to suppress my immune system. the first time, it took about seven-and-a-half hours — the next ones were shorter, about four to five hours long. they told me there could be side effects, the worst [being a rare brain infection]. i said, ‘if that happens, i don’t want you to revive me.’ but i got through the infusions no problem at all.

my kidneys aren’t going to get any better, but i can live with them at the level they’re at, which is between 35 and 40, and that’s okay.

this whole thing hasn’t really bothered me emotionally, but i did feel a bit depressed that we haven’t been able to go on our yearly two-month trip puerto vallarta. we’ve always traveled, but not so much anymore. partly because of covid and partly because insurance now is so difficult and costly. but we hope to go next year.

we still walk and golf in the summer. i’m pretty much back to normal.

for more information on anca vasculitis, visit vasculitis foundation canada.

robin roberts is a vancouver-based writer.

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shortness of breath led saskatchewan man to rare disease diagnosis

microscopic polyangilitis is a rare autoimmune disease that has a 5-month survival rate if left untreated.

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shortness of breath led saskatchewan man to rare disease diagnosis

microscopic polyangilitis is a rare autoimmune disease that has a 5-month survival rate if left untreated.

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my kidneys aren’t going to get any better

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