Tag: dermatomyositis

COVID-19 vaccinations and dermatomyositis

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Over 230 million Americans have been fully vaccinated against SARS-CoV-2, roughly 69 percent of the United States population. Mass COVID-19 vaccinations were seen as a critical step in reopening hard-hit local economies and continue to be seen as essential for maintaining whatever passes for normalcy in our post-COVID world.

But lost in the endless lectures from community leaders and pushes from politicians for vaccinations was any sort of consideration about the safety and efficacy of the vaccines for those of us with underlying medical conditions. Quite the contrary, health officials put us first in line for the vaccines.

The SARS-CoV-2 vaccines were tested in July 2020 on healthy patients and distributed broadly starting in December 2020. While the vaccine has been heralded as safe, even healthy patients have missed work, fallen ill, and come down with rashes that resemble signature symptoms of dermatomyositis, lupus, and other autoimmune diseases. So what about those of us with malfunctioning immune systems?

Do the risks outweigh the benefits?

To no one’s surprise, COVID-19 czar Anthony Fauci told attendees at a December 2020 hematology conference to urge immunosuppressed patients to get the COVID-19 vaccine. Attendees actually doing research on COVID-19 in immunocompromised populations agreed with Fauci, but admitted at that time there was not yet data available to back up Fauci’s recommendation.

Early studies of the SARS-CoV-2 vaccine understandably excluded immunosuppressed patients. Later studies focus on HIV-infected individuals, patients being treated with stem cells, organ transplant recipients, and leukemia patients. Respected British medical journal The Lancet, to name one, published a Swedish study of immunocompromised patients, stating the results showed the Pfizer vaccine to be reasonably safe. However, autoimmune patients were not included in the study.

The American Association for Neuromuscular & Electrodiagnostic Medicine discusses in detail the pros and cons of vaccines for people suffering from neuromuscular diseases. Because these types of diseases often affect muscles involved in breathing, they encourage those afflicted who are not taking immunosuppressants to obtain the vaccine.

However, for immunosuppressed patients with neuromuscular diseases, the researchers advise caution. While the benefits of the vaccine may outweigh the risks, studies of mRNA vaccines on immunosuppressed groups are scarce.

Other public-health authorities and doctors all over the world have also advised immunosuppressed patients to get the vaccine, claiming the risks outweigh the benefits. Following the American College of Rheumatology guidance, my own doctors also advised me to get the SARS-CoV-2 vaccine, stating their other autoimmune patients were able to do so safely.

But few of these doctors and researchers have even looked into the most important question: Would the vaccine actually help me?

Is the vaccine effective for the immunosuppressed?

A research group at Johns Hopkins attempted to answer that question. They found only 17 percent of immunosuppressed patients mounted antibodies detectable to SARS-CoV-2, compared to 100 percent of patients with healthy, functioning immune systems. For patients taking steroid-sparing agents, like methotrexate and azathioprine, the researchers could only detect antibody responses in 8.75 percent.

The Lancet study cited earlier also showed significantly lower seroconversion rates in organ transplant patients taking immunosuppressants like mycophenolate mofetil and azathioprine. Only 43 percent developed antibodies for identifying and combating SARS-CoV-2.

Even in the general population, a vaccine is not 100 percent effective; in those with weakened immune systems, the response will be limited.

Spyridoula Vasileiou, PhD, Baylor College of Medicine

A study published in October 2022, 22 months after the vaccine was made publicly available for populations most at risk of contracting COVID-19, also found the immune systems of immunosuppressed patients responded poorly to the SARS-CoV-2 mRNA vaccines.

When I bring up these studies to my doctors, they look at me somewhat blankly. Though none of them is an uneducated sheep simply following the herd, I imagine each of them feel pressure from various government agencies, lawyers, medical boards, and insurance companies to follow the prescribed guidelines. And who can blame them? Even among specialists, dermatomyositis is even less understood than novel coronaviruses.

Dermatomyositis and COVID-19

When the vaccine was first released, the general consensus, based on sound medical logic, was that any patient taking an immunosuppressant would obviously be at greater risk. Not for only were people with malfunctioning immune systems more likely to contract COVID-19, but many expected them to suffering more severe symptoms and be more likely to die or see long-term damage to their bodies.

In spring of 2020, this made sense to me, too. I feared if I contracted the disease, it would be nearly impossible to fight off. I did not leave my house for three weeks, despite objecting to mass shutdowns aimed at protecting people like me.

But then came Donald Trump’s infamous Tweets about hydroxychloroquine, citing early, incomplete evidence that the drug was effective in vitro (specifically in monkey kidneys cells) in blocking infection. Then doctors in India started prescribing it as a prophylactic. Months went by with me dodging COVID as I adapted to the pandemic world so I could have some semblance of a social life and maintain muscle mass. As a long-time user of the drug, even then, I started to wonder if hydroxychloroquine truly did help prevent COVID-19 infection.

More sloppy research came to light, and discussions of the efficacy of hydroxychloroquine in preventing COVID-19 to this day remain politicized. The World Health Organization does not recommend it. The Lancet says it never worked in clinical settings. As late as August 2021, the American Journal of Medicine wrote the evidence is still incomplete but interestingly concluded the antimalarial has no clinical benefit.

Hydroxychloroquine prophylaxis or not, I, the unvaccinated immunosuppressed dermatomyositis patient who went to gym, the store, even restaurants and bars, had still not acquired COVID-19. This, of course, ran contrary to most medical and scientific reasoning.

When I finally did acquire COVID-19 over Thanksgiving 2021, it was the tail end of the Delta variant and the beginning of Omicron. Yet, I fought off the virus relatively unscathed, save for my poor sense of smell.

So what the hell was going on? Was my immune system just destroying everything in its path, from Alpha to Omicron, including me?

Imperfect immune systems and the insanity of bureaucrats

Twelve seasons of House, MD, four rheumatologists, three dermatologists, two stints writing proposals for the several eminent immunologists, and a drug trial later, I am not convinced humanity understands infectious diseases and our own immune systems nearly as well as experts advertise.

COVID-19 alone proved that. The world’s doctors, researchers, bureaucrats, and lab rats rushed to find solutions and cures for COVID only for leading authorities to lose credibility amid rash proclamations that routinely had to be reversed.

Twice, the federal government was wrong about masks. An Arizona Home Depot was out of anything resembling a facial covering as early as January 2020. Amid the sellouts, U.S. Surgeon General Jerome Adams told people via Twitter to stop buying masks, stating, “They are NOT effective in preventing general public from catching coronavirus.” The CDC similarly did not recommend facial coverings because “the virus was not spreading in the community.” In April, they backtracked on their original position. By June 2020, they persuaded governors to fine or jail anyone caught unmasked in public.

The CDC later joined the chorus of overqualified morons who blamed anti-maskers for the summer spikes in COVID cases throughout the U.S. Sunbelt only to realize the American and European northerners would suffer their own Armageddon six months later. Winter was coming, and November 2020 to March 2021 saw the highest case counts of the entire pandemic—even with mask mandates, mass shutdowns, and the beginning of vaccine distribution.

The FDA was no better. Early in the pandemic, they issued emergency authorizations for doctors and pharmacists to treat COVID-19 with hydroxychloroquine, causing the nation to nearly run out of one of two drugs keeping me alive. Months later, these same bureaucrats completely reversed their proclamation.

Then came the U.S. government’s most incessant, most obnoxious, most overbearing fear campaign since World War II: Get vaccinated or die.

While the vaccine was indeed a scientific and political breakthrough and absolutely necessary to ending the socioeconomic chaos, badgering individuals to shove a barely tested substance into their bodies without considering the consequences revealed the ineptitude of the very agencies who allegedly exist to prevent these sorts of issues.

Doctors started seeing dangerous swelling and inflammation in the hearts of newly vaccinated, otherwise perfectly healthy men aged 18-29.

Immunologists in Germany observed five times as many new-onset dermatomyositis cases at their clinic in 2021 compared to the previous two years. They attribute the uptick in an otherwise extremely rare disease to both the SARS-CoV-2 vaccinations and virus itself. Saudi Arabian doctors also noted the phenomenon.

Pakistani doctors reported similar rises in rheumatoid arthritis following COVID-19. My own rheumatology clinic also saw increases in autoimmune cases following mass vaccinations.

Other data about immunocompromised individuals and COVID-19 also emerged. The Johns Hopkins group referenced above found that immunosuppressed organ transplant patients were not more likely to die from COVID-19, as commonly thought when the pandemic began.

People who already had dermatomyositis when they contracted COVID-19 exhibited better outcomes than the general population.

More fascinatingly, patients who already had dermatomyositis when they contracted COVID-19 actually exhibited better outcomes than the general population—lower severity, lower death and hospitalization rates. With the exception of those with lung involvement, in general, dermatomyositis seemed to be a protective factor against COVID-19.

These findings mirror my own experience with COVID-19. My fever and difficulty breathing barely lasted 36 hours. The worst of my symptoms was my loss of smell and taste.

Vaccinations and dermatomyositis patients

Given the research, mRNA vaccine safety does not seem to be more of a concern for dermatomyositis patients than other groups. However, for those taking the most effective dermatomyositis drugs—azathioprine and mycophenolate mofetil—roughly 1 in 3 will develop the antibodies needed to truly be called vaccinated.

The mRNA-based SARS-CoV-2 vaccine seems to be just as safe for dermatomyositis patients as it is for those with properly functioning immune systems.

Dermatomyositis patients, like all patients, should talk to their doctors before deciding whether or not to be vaccinated. For me, because I take azathioprine, the risks of further altering my immune system outweigh the benefits of a vaccine unlikely to help.

But for dermatomyositis patients, there is only a 1 in 3 chance the vaccine will work.

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.

Eighteen months in a dermatomyositis drug trial

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When I was first diagnosed with dermatomyositis, I felt hopeless about the prospects of humankind ever developing a drug specifically for my orphan disease. What profit-seeking entity would throw money at a disease so rare it makes lupus look like a pandemic? What congressional representative could justify spending taxes researching an autoimmune condition that may not even exist in the district they represent?

Could I count on the benevolence of strangers? Should I expect self-interested organisms hellbent on survival to be interested in preserving, or at least, improving, a genetically malformed member of their species?

In fall 2019, I received a call from Mayo Clinic in Scottsdale, Arizona. A dermatologist there wanted to enroll me in a phase 3 clinical trial for a drug developed for dermatomyositis and other rare inflammatory conditions.

I jumped at the opportunity. Any new drug had a strong chance of being an improvement over the azathioprine I had been taking.

Becoming a guinea pig

When the trial started, many asked if I was nervous about ingesting a substance not yet approved by the Food and Drug Administration. The answer was a resounding no.

For one thing, dermatomyositis is life-altering and irritating enough that I would prefer side effects from any drug–including the azathioprine I already take.

Azathioprine is classified by the U.S. Department of Health and Human Services as a carcinogen. According to the Mayo Clinic dermatologist, spending 35 years on the medicine I have been on, azathioprine, virtually guarantees I will end up with skin cancer before I turn 70. Other studies confirm risks of skin cancer and lymphoma. The sooner I can rid my body of azathioprine, the better.

Even then, as an anarchist, an agency stamp on a drug means little to me. Many of the FDA-approved autoimmune treatments carry risks of depression, insomnia, even death. A woman with arthritis I used to work with on rituximab was hospitalized after the medicine caused Guillain-Barre syndrome. And there is not one autoimmune treatment on the planet that does not put the patient at risk for humanity’s latest afflictions, COVID-19 and monkeypox.

Even if all pharmaceutical companies cared about was money, they have no incentive to kill or harm their customers. And even if a company were okay rushing drugs to market in search of short-term gains, a single nasty side effect from a single drug could ruin a billion-dollar corporation. Profits would be spent settling lawsuits. Few doctors or patients would ever trust the company again.

Finally, the drug I tested, lenabasum, had entered phase 3 clinical trials. By the time a drug reaches this late phase, it has already undergone years of safety and efficacy testing.

Schedule I substances

Lenabasum is ajulemic acid, synthetic cannabinoid designed to attack the severe inflammation and muscle degeneration associated with dermatomyositis. Yes, it is derived from cannabis, making it a Schedule I substance. In short, that means the federal government recognizes no acceptable medical use for it. Merely possessing the drug can land you 10 years in prison.

I have no idea how exceptions for this work, especially in the era of marijuana legalization, but the trial drug was definitely treated like contraband. The pharmacist had to hand deliver it to the patient, me, inside the study coordinator’s office. I was required to sign that I received and accepted the drug. The pharmacist had to affirm she gave it to me.

Lost in the insanity of this procedure was that the manufacturer had removed the pscyhoactive component of cannabis, tetrahydrocannabinol (THC). And even if they had not, I can buy recreational or medicinal cannabis containing ample THC at a strip-mall shop 3 miles from my house.

Perhaps even more hilariously, during the height of COVID-19, Mayo Clinic was shut down to any non-emergency use, and the pharmacist started shipping the scheduled substance to my house. Adhering to the strictest DEA definitions, this meant the pharmacist, the mailman, Mayo Clinic, and the U.S. Postal Service, were trafficking drugs.

Less guinea pig, more zoo exhibit

When I started the trial in February 2020, the violet-red Gottron papules adorning my knuckles were severely inflamed. They alone qualified me for the trial and turned me into a traveling zoo exhibit for medical students. Little in patient life underscores how different you are from everyone else like being introduced to a parade of twenty- and thirty-somethings for the first time as a textbook example.

Little in patient life underscores how different you are from everyone else like being introduced to a parade of twenty- and thirty-somethings for the first time as a textbook example.

To track adverse reactions, every visit, I filled out a 150-question survey, most of which were about itching and mental health. They also drew about six tubes of blood for every lab visit. Unlike labs ordered by me or my doctor, I was never able to see any of my results.

Apart from these procedures, the bimonthly study visits varied little from any other medical appointments. Admittedly, I looked forward to my visits. I enjoyed talking to someone who knew more about dermatomyositis than me for once.

Answering the $30,000-per-year question

Three months into the double-blind drug trial, the papules had all but disappeared. Hair loss slowed down. My scalp barely ever itched. I was even able to decrease my daily dose of azathioprine. I thought for sure I was on the lenabasum and that it had worked.

I was wrong.

In June 2021, the study coordinator phoned to inform me Corbus Pharmaceuticals, the drug manufacturer, canceled the trial. They had not seen the results needed to justify spending millions more to develop and market a drug that would cost patients or insurance companies tens of thousands of dollars per year.

The study coordinator also told me I had been on a placebo. Any improvements the dermatologist, my rheumatologist, and I observed had nothing to do with the lenabasum.

Though I was mildly disappointed, this was actually good news. Not only had my immune system backed off, but it did so while significantly decreasing my dose of azathioprine.

Further, despite lenabasum containing no THC, throughout the drug trial, I felt drained and unmotivated. Because the study overlapped the social withdrawal from worldwide quarantines and one-size-fits-all policies to prevent the spread of COVID-19, no one can say for sure if the lenabasum caused those feelings. That said, other patients reported similar side effects. Regardless, I was happy to rid my body and mind of anything that had contributed to 14 months of lethargy.

It would have been nice if lenabasum truly worked, but even if it had, insurance companies would have been reluctant to cover such an expensive drug.

Would it have been nice if the new drug worked? Yes. But even if it had, I am not certain it stood a future. Insurance companies would have used any excuse to avoid paying the $30,000 per year lenabasum would no doubt fetch following FDA approval. That would include remaining on the azathioprine that had worked all along and could be bought at prices even developing nations could afford. Cancer risks be damned.

Creatine kinase spiking, fighting off a virus

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Monday morning blood tests revealed my creatine kinase levels have spiked. Tuesday, May 18, my throat ached and swelled. By Thursday evening, congestion made breathing through my nose difficult. Friday morning, I could feel my immune system ripping apart my muscles and inflaming and stretching my skin. I told my sister I felt like I had the flu after being beaten up by a football defensive end.

Fortunately, I never had a cough or any remote respiratory impairment, so whatever this is, it is likely not COVID-19. And my typing this on a Sunday afternoon is proof enough that I am on the road to recovery.

What concerns me, however, are my muscle aches. Though the pain is not debilitating, it is sore—the same way one feels a day after an intense workout. In conjunction with my elevated creatine kinase levels, this means my immune system for the first time in 2 years is back to attacking my muscles—even while taking drugs to suppress it.

It can hardly be coincidence this is happening while I am ill. Though I need to confirm with a doctor, I suspect my suppressed immune system had been struggling to rid of the infection and geared into hyperdrive to destroy whatever virus inhabits my body.

These events come as a setback after more than a year in a drug trial. I messaged the dermatologist running the trial about what has been going on. I can only hope this dermatomyositis flareup soon extinguishes itself, and that the new drugs have not failed.

The forgotten man and the perils of one-size-fits-all policies

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Politicians and intellectuals around the country have defended governors’ one-size-fits-all policies for combating COVID-19. Among their boldest claims is that they are saving lives and sparing health-care systems. For them, the ends justify the means—no matter who they hurt along the way.

On June 29, Arizona Governor Doug Ducey forced gyms, bars, theaters, and water parks to again close. They had already suffered March, April, and most of May without customers. Many had to let employees go.

A handful of Phoenix-area gym owners defied the order and sued the governor in county and federal court. They claimed their constitutional rights were violated. Unsurprisingly, the gym owners lost. Though they recognized the hardships bore by the fitness chains, both judges sided with the strong arm of government. In short, they gave the same excuse all governments give when overreaching: crisis.

Yet, lost in the fitness chains’ lawsuits and in the judges decisions is what William Graham Sumner termed the forgotten man—the person whose interests have been neglected, the person who often suffers the most.

Unintended consequences and the forgotten man

This summer, I am the forgotten man.

As a dermatomyositis patient, I take drugs that suppress my immune system, putting me at a higher risk for contracting the virus than healthy thirty-somethings.

Yet, I also need access to real gym equipment to fight inflammation and keep my lungs and muscles strong. Without controlled weight exercises, my muscles slowly degenerate. Breathing becomes a chore. Should I contract COVID-19, strong, healthy lungs and chest muscles will be my best chance of survival.

I am faced with what philosophers call a hard choice: Should I go to my gym to keep my muscles and lungs strong, even at the risk of getting the virus? Or should I stay home and make the most of YouTube workouts and garage equipment at the risk of sacrificing my long-term health?

In March, even before the Arizona governor shutdown Phoenix, I chose the latter. With so little information at the time about the virus, I recalled my internist telling me in January that I was at risk for influenza and shingles. I also assumed the worst would be over by May.

But as the pandemic drags on like a nine-season Netflix series, isolation was no longer an option—for me or anybody else. Amazon Prime freebie workouts could only do so much for my muscles. My mental health deteriorated. My old gym, like so many business dependent on in-person customers, had to bury itself in the mass grave of COVID-19 casualties.

I went to my new gym for the first time on June 9. As I joked with my friend, returning after 3 months of being away is like having sex after three years of being abstinent: You’re sloppy and out of practice, but it feels so good, and the eye candy is worth it.

The government chooses for me

Fast-forward three weeks. I reached the bottom of the stairs in my gym shorts and running shoes when my girlfriend informed me the governor closed the gyms. My face ruddied. My brain wanted to explode. I shouted several curse words and struck the wooden railing with my fist. Fortunately, neither broke.

By late June, daytime temperatures consistently hovered around or above 110 F. Contrary to the governor’s attorney’s presumptive suggestions, working out in the garage or outside is not an option—especially for someone supposed to avoid the sun.

Now, thanks to the Arizona governor’s one-size-fits-all policies, I find it harder to sleep and to breathe.

I’ve tried to make the most of my situation. My girlfriend and I faked our way through Zumba videos. I’m 13 days into a 30-day ab challenge video. And there’s always push-ups and the occasional cool morning or late evening to go for a walk.

All the same, I want to be able to decide for myself what I can do and where I can go. Only I know what is best for myself. And for me, that means not living forever in fear. It means being able to access what I need to fight for my life—both now and 30 years in the future.

Editor’s update: The current and former Arizona health directors do not even agree on the dangers of contracting COVID-19 at the gym.

Breathing difficulties: the demon on my chest

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Breathing difficulties have made the last two weeks hell. The one symptom of dermatomyositis that has largely been dormant for over a year has returned—weak pectoral and diaphragm muscles. My breaths are once again shallow. Working out is a chore. I wake up in the middle of night feeling like my body is not getting enough air, like I’m panicking, like a demon is sitting on my chest.

John Henry Fuseli’s The Nightmare illustrates what breathing difficulties while lying flat feel like for me.

Has stress inflamed my condition? Have my medications stopped working? Have I simply taken them too irregularly and messed up my progress?

Two business trips, a late-night birthday bash, and attending to doctor appointments have meant irregular schedules and interrupted circadian rhythms. I compensate for sleepiness with caffeine. Too much caffeine keeps me awake, creating a vicious sleep cycle. I struggle to motivate myself to workout. Both exacerbate my symptoms.

Just doing a mild abdominal workout took all my strength tonight. Typing out this note has zapped what little energy I have left.

Hot and sour soup and the small things in life

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In the days after I was diagnosed with dermatomyositis, I had no idea what would happen to me. I knew little about autoimmune diseases, and this one was about as rare as they come.

To ease my trepidation, I ordered hot and sour soup from our local Chinese dive. I shoveled and savored spoonful after spoonful—as though the final slurp would be my last. My worries about life’s daily helping of bullshit melted away. My girlfriend’s concerns about her bridesmaid dress seemed trivial.

I recalled the articles, statistics, and prognoses I read online and pondered what the rest of my life would look like. Would the few available treatments work? Would I be on prednisone for a decade before dying of liver failure or Cushing’s disease? Would I make it another five years?

Fast forward eighteen months: My concerns, though understandable, could hardly be justified. Not one of my eight doctors was worried about premature death. Most said the condition could be managed. And it has been—without prednisone.

Before dermatomyositis, I often let my anxiety determine my future: I spent my days waiting for the next paycheck, for the next vacation, for life’s next major milestone. I spent my nights tossing and turning over what was to come. Like a fortune teller, I feigned awareness of my future. Like a prophet, I predicted imminent doomsdays if my plans fail to come to fruition.

Having dermatomyositis has taught me I cannot hang my happiness on some idealized future. Come what may, I have to accept myself as I am and my life as it may be.

As that bowl of hot and sour soup taught me, life is full of small victories and everyday joys. One would think someone like me, who indulges in fine wines, whiskeys, and world cuisine, would celebrate those happy moments. But the small things in life are easy to forget. And sometimes, those small things are the best part.

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.

Flourishing in the face of autoimmunity

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Autoimmune diseases can leave sufferers feeling alone and vulnerable. To our friends, we sound like strangers spitting out words they have never heard. We try to get someone, anyone, to understand that every day, we walk a tightrope made taut by modern medicine over a 10,000-foot drop to oblivion. If and when we fall, doctors cast us lifelines. Sometimes, we lose our grip. Sometimes, the lines break.

The rarer the condition, the more anxious and more depressed its leaves the afflicted. We visit doctor after doctor and wander the world in search of charlatans who have answers to the darkest of questions: Why me? What caused this? Did I do this to myself?

Seeing talented sports stars, actors, singers, and musicians flourish despite their conditions inspires those of us battling autoimmunity.

We have to remind ourselves daily that diagnosis is not the end. Most autoimmune diseases have been thoroughly studied. Though few, if any have cures, many have multiple treatment options. Most treatments are safer and more effective than they have ever been. And in the twenty-first century, many autoimmune patients live long, productive, even happy lives.

Staying on top of their game: sports stars with autoimmune diseases

Pro golfer Kristy McPherson was told by many doctors she would have to give up sports after being diagnosed with juvenile idiopathic arthritis at age 11. A rheumatologist at the Medical University of South Carolina told her that even with the disease, she could still do whatever she wanted.

Pro golfer Kristy McPherson refused to give up sports after her doctors diagnosed her with juvenile rheumatoid arthritis and told her she would never be able to run or jump competitively again. [Chris McGrath | Getty Images]

“All I needed was that one doctor to tell me that,” McPherson said. “That’s when I went back to playing sports.”

Months after becoming the world’s top tennis player, Caroline Wozniacki was diagnosed with rheumatoid arthritis.

She explained: “You start asking yourself questions: What does this mean? Does it mean I can’t get in as great of shape as I was before?”

Though she initially struggled, she bounced back to win the 2018 China Open.

“[Wining in Being] meant so much to me,” Wozniacki added. “It also gave me the belief that nothing is going to set me back. I’m going to work with this and this is how it is, and I can do anything.”

Both McPherson and Wozniacki now speak with young people about living with the rheumatoid arthritis.

Having an autoimmune disease doesn’t mean you can’t be beautiful

Kim Kardashian’s makeup-free selfies have encouraged many others to acknowledge their psoriasis and helped me feel better about flare-ups on my face.

“The disease can cross all socioeconomic lines,” Randy Beranek, CEO of the National Psoriasis Foundation, told The Atlantic. “If someone as famous and visible as Kim Kardashian can have it, it doesn’t make your disease feel so isolating.”

Last December, Kardashian even polled her fans on Twitter about effective medications.

Celebrated singers and musicians have autoimmune diseases

Actress and pop singer Selena Gomez a few years ago revealed she has lupus and in 2017 informed her fans on Instagram about her life-saving kidney transplant.

Few 24-year-olds probably understand what it’s like to have their bodies threaten their lives. To deal with the psychological pain, Gomez checked into Arizona’s Meadows rehab facility. She then faced backlash from fans and from media, who thought she was being treated for drugs or alcohol addiction.

Like Kardashian, revealing her condition to the world opened up mainstream and social media discussions about lupus: What is it? What does it mean for Gomez’s career and for others living with the disease?

Singer Toni Braxton also has refused to let lupus derail her career or her commitment to her family. One of the most decorated pop singers in American history, she has won seven Grammy Awards, nine Billboard Music Awards, seven American Music Awards, among numerous other accolades.

As a guitarist, I find Shawn Lane’s story most inspiring. Widely regarded as one of the greatest guitar players ever, Lane struggled since he was twelve with psoriatic arthritis. His condition not only caused itchy, painful rashes on his skin, but also stiffness in his joints, making it increasingly difficult to play his instruments.

Shawn Lane psoriatic arthritis guitar player
Guitar player Shawn Lane played his entire career in spite of stiffening joints and skin rashes from psoriatic arthritis. His playing and compositions continue to inspire guitarists even after his untimely death in 2003.

Worse, Lane developed Cushing’s syndrome from his long-term use of cortisone to treat his skin and joints. He had to stop playing guitar and died a few years later after developing breathing problems.

Nonetheless, as readers can find more about here, Shawn Lane lived as full of a life as possible, playing in spite of the pain, and producing some of the most beautiful instrumental music of the last thirty years.

Laurence Olivier and Maria Callas: living with and dying from dermatomyositis

As I mentioned here, heralded actor Laurence Olivier and legendary soprano Maria Callas both battled and eventually died from dermatomyositis. That never stopped either of them from prolific careers.

Olivier has been called the most definitive actor of the twentieth century. He lived to be 82, dominating the British stage and starring in more than fifty films.

Callas had a vocal range just below three octaves and is still one of the best known and influential opera singers of the twentieth century. Despite her disease affecting her voice in her later years, she still performed. Forty-plus years after her death, Callas’s name still sells albums.

Dermatomyositis and dentistry

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I hate the dentist. The mere thought of the pick scraping my teeth and gums drives me wild like a dog forced to endure a high-pitched whistle. The memories of the drill hitting a nerve the dentist thought she numbed causes me to cringe like a child being force-fed once-boiled, week-old brussel sprouts. If ever you put a committee into a room and asked them to think of ways to torture human beings, most would suggest the dentist’s chair–picks, drills, giant needles into the cheek and all.

Taking medications to keep my immune system in check has forced me to return to the dentist at least twice in the next month.

Because of this, I have spent much of my adult life taking care of my teeth, brushing daily, twice yearly cleanings. The best I could ask of myself is to floss more frequently. Between my hygiene and being subjected to numerous municipal fluoride experiments, my teeth have been largely impervious. I’ve had maybe six cavities my entire life–most of which were during my teen years, when my parents paid the dental bills and a toothbrush was as foreign to me as bathroom cleaner.

I returned to the dentist Thursday only to find out I have five cavities, including a nasty deep one that will require removing the tooth’s root. My dentist was so surprised by the decay he asked me: Had I changed my diet? Was I taking some crazy medication? Had I stopped brushing in protest of the Trump administration?

Immunosuppressants and oral health

Six months of immunosuppressants have desiccated my mouth like border patrol to the Arizona deserts and leaving my teeth to the mercy of the bacterial cartels.

Dental plaque (a bacterial mass) loves to hide in the canyons, ridges, and crevasses in between my teeth. A healthy mouth can better fight them. The immunocompromised, which now includes me, have to stay vigilant.

I’m now paying the price for those times I was too tired or too lazy or too busy to floss. The cost: a root canal, a crown, and five fillings. This amounts to over $2,000 in dental work and four hours in the dental torture chamber.

Autoimmune diseases and oral health

Interestingly, this may not be my fault alone. According to Colgate, dermatomyositis itself could be the cause. Their one-pager on autoimmune diseases and oral health points out how these diseases can cause trouble with eating, swallowing, and dry out the mouth and lead to more cavities.

Dermatomyositis dries out the mouth and causes trouble swallowing, leading to more cavities.

That said, as my dentist and hygienist explained, the solution is better oral hygiene. Three or four cleanings per year could also help. That and spending the ides of March in the dentist’s office having my teeth repaired.