Tag: symptoms

Fighting COVID on immunosuppressants, part I

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One week before Thanksgiving 2021, after nearly two years avoiding the SARS-CoV-2 virus, I finally caught COVID-19.

Day 1 – A simple sore throat

My throat swelled. I thought little of the inflammation because difficulty swallowing (dysphagia) is a classic dermatomyositis symptom. My immune system attacks the muscles in my esophagus, causing the throat muscles to weaken and have trouble contracting. This was one of the earliest signs of my disease, beginning in May 2018.

At work, I was amid writing a proposal for on-call geotechnical services to a California city. I took two naproxen and fought through the symptoms.

Day 2 – Difficulty breathing and loss of smell

I woke up exhausted with an intermittent cough. My chest felt like someone had stacked hardcover medical texts on my sternum. Breathing became a chore—albeit nothing life threatening.

Proposal deadlines be damned. I felt terrible and took the day off work with plans to return to writing over the weekend.

By Wednesday evening, food began to taste bland. I had trouble smelling coffee beans. Even my sugar-free soda alternative—water with black cherry Mio—tasted like cough syrup aged in wine casks.

Day 3 – COVID-19 suspected

My congestion worsened. My throat was beyond sore. I still had difficulty breathing. And at that point, I could not even smell the bergamot in my cologne or in my Earl Grey tea.

Add in my feverish chills and all the signs of COVID-19 were present. This realization made me anxious. Not only would I be battling the virus with a suppressed immune system, but I would be doing so without the benefit of the vaccine.

As I discuss here, the immunosuppressants I have been taking for my dermatomyositis render the vaccine largely ineffective. And because of my underlying condition, being vaccinated would be more of a risk than contracting COVID-19.

At least, that was my hypothesis based on two peer-reviewed studies. With my symptoms, I was about to put it to the test.

Day 4 – COVID-19 confirmed

I ordered an at-home COVID-19 test from Walgreens to be delivered early Friday morning via Door Dash—a testament to twenty-first-century technology and convenience.

Within three minutes, the strip on the at-home test turned fuchsia, well beyond the light pink needed for a positive result.

Interestingly, that afternoon, after just 36 hours, my fever diminished. I was able to breathe easier.

I mustered up the energy and courage to notify the two people with whom I came in close contact of my positive test—my psychologist and a friend I went hiking with the prior Sunday.

I felt like I had texted sexual partners about a case of the clap. Nobody was thrilled, and my friend in particular did not receive the news well.

Day 5 – Symptoms improve

All my symptoms improved except for the worst sinus congestion of my life and the accompanying loss of smell. With some over-the-counter nasal decongestants and a couple naproxen, I was able to return to writing the proposal I had put off for three days.

Day 6 – Sunday morning pseudoephedrine delivery

My initially unsympathetic friend changed her attitude and visited me Sunday morning to deliver pseudoephedrine. Thanks to nonsensical regulations aimed at tracking would-be Walter Whites and curtailing at-home methamphetamine production, pseudoephedrine is one of the few items Amazon or Door Dash cannot deliver.

Day 7 – Internal proposal deadline met

I felt markedly better by Monday morning. Thanks to the modern miracle that is pseudoephedrine, I was able to stave off the severe congestion and make enough progress on the proposal to ready it for Tuesday’s peer review.

Click here for part two of my battle with SARS-CoV-2.

Dermatomyositis symptoms flare up as summer arrives

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My dermatomyositis symptoms have flared up again. My forearms are dry and scaly. A tiny bloody rash appeared on my tricep. I have pain in my chest. My breathing once again feels shallow and tight like I’m being squeezed by some desert-loving constrictor–a kingsnake, perhaps.

dermatomyositis tiny bloody rash tricep
The darker spot toward the bottom of the photo (not the darkest ones on the right, which are moles) is a bleeding rash from my dermatomyositis. It may have been triggered by increased sunlight as the days grow longer and the clouds are few. Readers will also see the discoloration in my skin,. It has been a permanent feature since last April.

Local temperatures soar. Bodies easily sweat. The cloudless skies bathe the Sonoran landscape in blue shadows and bright reflections requiring sunglasses and white balance corrections. The sun rises so early I found myself awake at 4:45 a.m. Summer is on the Arizona horizon.

I wonder if these events are linked: Increased sun exposure causes my autoimmune condition to flare up.

Doctors will certainly think so, but the flare ups could just as easily be work stress. I had to get two proposals and a notice of intent to propose out the door within six days of each other. I feel behind. I feel exhausted. Despite taking melatonin, I woke up in the middle of the night, wondering if we forgot to upload the correct version of the project description.

What of my medicines? I am now on just 7.5 milligrams of prednisone, the lowest dose I’ve taken since last June when all this turned for the worst.

Thursday, I visit my rheumatologist. Hopefully, we can figure something out. I cannot live through the hell that was last summer: the itching, the burning, the gasps for air as I wait for lab test results and wonder if I truly am months away from death.

I remind myself I’m fighting this. I can fight this. I will fight this. I did it before. I can do it again.

Allergic reaction to methotrexate

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Tuesday night, I had what my pharmacist describes as an allergic reaction to methotrexate. Within two hours of injecting it into my thigh, I developed nickel- and quarter-sized hives on my knee and elbow pits. My breath was short. My heart palpitated.

With any other patient, with any order condition, with any other drug, these symptoms would be a classic allergic reaction. Any doctor would tell you to stop taking it. When you’re dealing with autoimmune diseases, this could almost mean anything.

A classic allergic reaction is caused by the immune system’s hypersensitivity to a typically harmless substance. Treatment for such a reaction is usually a drug that mildly suppresses the immune system. For example, diphenhydramine (Benadryl) is an antihistamine that treats all sorts of mild allergy attacks and cold symptoms. It is a common ingredient in NyQuil and other over-the-counter cold medicines. Doctors use another common immune system suppressant, prednisone, to treat asthma and rheumatoid arthritis. I also take it to treat my dermatomyositis.

Methotrexate is a heavy-duty immune system suppressant. The irony of an immune system suppressant causing an allergic reaction was not lost on my pharmacist or my internist.

Such a reaction after being on the medication since October is odd, but according to my pharmacist, very possible. Also odd: shortness of breath is a symptom of untreated dermatomyositis. However, hives are not. And this is the second week I have had them after injecting myself with methotrexate.

Because I only take the drug once a week, I have already discontinued it. I made an appointment with my rheumatologist for next week. I will most likely switch to a different medication, most likely, another immune system suppressant, azathioprine.

The spirituality and sensitivity of broken skin

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I look at the rashes covering my skin. I wonder if people notice, if the woman looking at me at the gym thinks I’m cute or just some monster.

Is God punishing me? Mocking me? Testing my faith? Has the devil come to collect the bill for the body I sold to keep my soul? Has Anubis weighed my heart against a feather and sentenced me to a watery, crocodilian hell?

Am I an evolutionary accident, some creature that should never have survived infancy, some being that should not be? Of the 20,000 genes in my body, should a single mutation change render me less than human?

Most people ask if I’m sunburned. I try to be polite, but how do I explain autoimmunity to the grandmother at the dermatology clinic, to the child at the store?

Before my first visit to the dermatologist two months ago, the rashes itched and burned so horribly I could not sleep—even with two antihistamines and melatonin. I could not sit in my own home with the fan on because the moving air scratched and irritated my skin. I hid under blankets to relieve the pain.

I’ve never been more thankful for prednisone.

The Hebrew Bible refers to skin diseases as tsara’at—meaning to be thrown down or humiliated. Those afflicted with these conditions were considered ritually impure; presumably, their disease was God punishing them for behaving immoral.

The Bible is not alone in its discussions of skin diseases nor are the Jews unique in their treatment of persons with them. As Philip D Shenefelt and Debrah A Shenefelt point out, across cultures, humans feel a spiritual connection with our largest organ, perhaps because it is the part of us most visible, and “persons with visible skin disorders have often been stigmatized or even treated as outcasts.”

Though we understand more than ever about skin diseases, though modern persons are not ostracized or forced to shout “unclean” as they walk down the street, I often still feel judged—even if the only one judging is the person looking back at me in the mirror.

Since being treated with corticosteroids, my symptoms have improved. My face is mostly clear, save for my Rudolph nose. The itching and burning is a fraction of what it was. I sleep better. I walk taller.

And hopefully, in time, my doctors and I will find a treatment to make my skin look new. In time, I will again feel human.