Tag: autoimmune disease

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.

Halloween week and the red-blood-cell scare

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Horror films with homicidal clowns and chainsaw-wielding serial killers define Halloween for most. But for me, with my health issues, little is more frightening than an abnormal medical test: This week, red blood cells showed up in my urine.

What exactly this means is any doctor’s educated guess. The urologist ordered ultrasounds of my kidneys and testicles, but since I have to wait a week for them, I’m obviously not dying. He also wants to shove a catheter up my urethra with a camera to check my bladder. Fuck that.

Best case scenario, red blood cells in my urine are just that. Maybe I worked out too hard Monday night before the test. Maybe my prostatitis from three years ago flared up.

Worst case scenario, I have kidney disease or cancer. I’m trying not to focus on this because I’ve had my blood tested so many times the last year, doctors would have likely seen something earlier.

Waiting, yet again

Nonetheless, waiting for test results, yet again, sucks. My heart pounds. My mind wanders. My own House episode continues.

I wonder what a couple tests mean for the rest of my life. Is my autoimmune condition destroying my kidneys? Are my medications to treat it affecting my kidney or bladder function? Is this just a fleeting result with little consequence after this week ends? Is my anxiety for naught?

Yet again, I wrestle with existence, with the purpose of life amid a universe that so often seems to bring only suffering. Sure, I’m not alone. I have coworkers with their own autoimmune conditions. I have Facebook buddies with diseases rarer than my own. I even have a good friend struggling with a much more daunting medical issue and awaiting his own prognosis this week. Clearly, the universe does not discriminate.

But are we, as humans, really meant only to survive? What of happiness? Can we really ever flourish when each day brings a new anxiety of its own, when life becomes a series of test results and visits to specialist after specialist, each one delivering another worry, another reason to fret?

Ancient wisdom for the diagnostic life

Western religions teach us not to worry. Christ tends to his flock. Yahweh watches his people. Allah blesses those who believe. Good triumphs over evil. God provides. But what comfort is heaven when you’re trapped in diagnostic purgatory, hoping you don’t end up in oncological hell?

The Stoics teach us to seize the day as it comes, to immerse ourselves in the moment.

“True happiness,” writes Seneca, “is to enjoy the present without anxious dependence upon the future, not to amuse ourselves with either hopes or fears but to rest satisfied, for he that is wants nothing.”

Such advice is all fine and well for the healthy, even for the unhappy or the unemployed. But those ancient words ring hollow when “he that is” cannot be.

Rough weeknights and coping with chronic fatigue

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Chronic fatigue has made weeknights rough lately. Despite ritualistic adherence to my azathioprine and hydroxychloroquine, my autoimmune disease zaps my physical and mental strength before the day ends. The moment my right foot crosses the threshold into our condo, I want to collapse.

Eight-hour workdays leave me feeling like I spent them picking anthracite from the walls of an Appalachian coal mine. My muscles feel like they’re sagging—even though I have gained strength. I gulp ultra-caffeinated preworkout energy boosters to start and finish my days.

Sports injuries have forced me to cut back on gym sessions. Between plantar fasciitis in both feet and extensor tendonitis in my right foot, I’m surprised I can stand. And of course, my inflamed lower spine aches and causes me to slouch.

Admittedly, some of this will get better. Sports injuries can be avoided with proper stretching and icing. I have scheduled monthly massages to repair my muscles and soothe my spine. And I’m only three months into a new job—every day feels like a full load of college classes, everything a lesson.

But for those like me with an overactive immune system, feeling tired and stressed can easily escalate to feeling exhausted and overwhelmed. Since stopping steroids in August, I feel like I’m walking through life perpetually sick, minus the drippy nose and sore throat.

I sometimes feel demotivated and depressed despite being otherwise happy with myself and my life. I can’t concentrate enough to read. I don’t have much energy to write or play guitar. I’m embarrassed to admit it took two hours over two evenings to pen even this.

I finished the latest seasons of Netflix’s best shows (Lucifer, Sex Education, and Derry Girls) months ago. Amazon Originals have never held my interest. The NFL airs the least exciting games of the season on weeknights. I have no energy or focus to start my Disneyland-ride-long cue of Great Courses lectures.

Nonetheless, I’m trying to stay positive. I’m trying to meet my goals. I’m trying to reignite my passion to write. I don’t want to make life one long binge watch.

I recall all the great things that have happened since this disease began—a new condo, a new job, a new guitar, another year with my girlfriend. I even earned the next certification level for proposal management. Come to think of it, while these summer months have been a drag, I’ve actually accomplished a lot in the last 18 months. I just wonder, as I did months ago, how much of it was me, how much was the prednisone. Has chronic fatigue become my new normal?

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 makes breathing difficult

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The recent switch from methotrexate to azathioprine has caused breathing difficulties. Though it’s nothing life threatening, my doctors are not sure why.

For most mammals, breathing is easy. Astronaut Chris Hadfield, on Darren Aronofsky’s “One Strange Rock,” calls it the most natural thing humans do. Aronofsky (of Black Swan fame) then shows a baby inhaling minutes after being born.

Like most healthy people, for most of my life, I took breathing for granted. I swam as a child. I ran cross-country in high school. I hiked four of Colorado’s Fourteeners. I played schoolyard football.

I also took my lungs for granted. I built campfires. I smoked the occasional cigar. Nothing ever bothered them, even after one had to be deflated (then later inflated) so my orthopedic surgeon could access and fuse my spine.

Dermatomyositis and Lung Involvement

Dermatomyositis has changed all that. Without prednisone or hydroxychloroquine, I feel short of breath. My chest feels tight. Breaths become heavy, even if my lungs otherwise function.

Shortness of breath can be a symptom of dermatomyositis because the immune system attacks the chest muscles, restricting breathing. This is most likely the cause of my issues.

Breathing difficulties are well documented in dermatomyositis and are attributed to several causes, including the disease itself and complications like aspiration pneumonia and interstitial lung disease.
As Lundberg et al. write, breathing difficulties are well documented in dermatomyositis and are attributed to several causes, including the disease itself and complications like aspiration pneumonia and interstitial lung disease.

Breathing difficulties could also be the result of aspiration pneumonia: Muscle inflammation causes difficulty swallowing, sending liquids and food down the wrong pipe, eventually causing an infection.

Long-Term Possibilities: Interstitial Lung Disease

Most concerning, dermatomyositis can lead to interstitial lung disease. In short, the immune system malfunctions as it tries to repair damage to the lungs. It scars and thickens the tissue around the air sacs, making it difficult to breathe and to get enough oxygen into the bloodstream.

Fortunately, my pulmonary function test in September came back normal. So too did my chest x-rays and high-resolution CT scans. Three weeks ago, I also had an EKG indicating my heart is very healthy.

Short-Term Possibilities: Medications

Ironically, the very drugs designed to keep my immune system at bay and help me breath can also cause lung damage. Methotrexate has been known to cause interstitial lung disease. So too have many anti-inflammatory drugs used to control autoimmune diseases, such as rituximab (Rituxan).

Azathioprine, the medication I am currently taking, can cause chest pain and increase your heart rate. Of course, those are also symptoms of dermatomyositis.

I returned to my rheumatologist earlier this week because I thought the drugs were causing the issues. He disagrees and believes my symptoms could be stress and anxiety.

Reversing the Cause and Effects of Breathing Difficulties

Two days later, after experimenting with taking the drugs at different times of day, I’m convinced we’re both wrong. I reversed the cause and effect, leading him to look at my symptoms as drug related rather than effects of the dermatomyositis itself.

I reversed the cause and effect of my breathing difficulties.

Azathioprine seems to clear up my rashes and keep my immune system from attacking my chest and shoulder muscles. But as soon as it wears off, the chest tightness and shortness of breath return. I get headaches. My heart speeds up. I become fatigued and want to head to bed.

In time, I think my doctors and I will fix this. Increasing the dose staved off the breathing difficulties all day, then they start to get better again a few hours after the drugs leave my body. Plus, switching medications is very hard on any body being attacked by its immune system.

Being reminded how rare dermatomyositis is

Posted on Posted in amyopathic dermatomyositis, autoimmunity, dermatomyositis, dermatomyositis, lupus, symptomsTagged , , , , , ,

Last week, at my annual check-up, my internist reminded how rare dermatomyositis is. He told me he had not seen a patient with the autoimmune disease in his 30-year-plus career. That includes his stint as a pharmacist.

He also relayed my dermatologist’s reaction when he first diagnosed me: “You won’t believe what this guy you sent me has.”

Like my internist, my dermatologist has been in practice almost 30 years and has not seen more than a couple cases of dermatomyositis. That was why it took him about two months to come up with the correct diagnosis. If not for the woman with him that day, it may have taken him longer.

https://www.youtube.com/watch?v=5ks-NbCHUns
Interestingly, legendary opera soprano Maria Callas had dermatomyositis. So did four-time Academy Award winner Lawrence Olivier, who many regard among the twentieth-century’s greatest actors. See him in Shakespeare’s Hamlet (1948) above.

An Opinion from a Consulting Dermatologist

The day he diagnosed me in July 2018, another doctor was present. I cannot remember her name or her specialty. My internist last week explained she was some sort of a consulting physician on rare dermatological diseases.

After reviewing my case file, she examined my rashes. I told her and my dermatologist about the trouble breathing and my blood tests, which showed elevated antinuclear antibody. I mentioned my internist’s suspicion I had lupus.

She then asked if I had trouble walking up the stairs. I said no.

She again examined the rashes on my fingers, neck, and shoulders. I now know what she was looking for: Gottron’s papules and a shawl rash–both diagnostic indicators of dermatomyositis.

She then walked back toward the computer and exchanged words I could not hear with my dermatologist. Five seconds later, they approached the front of the exam chair and suggested dermatomyositis.

“What in the world is that?” I asked them.

Too Rare—Even for Dr. House

Being an insatiably curious House, MD fan with an Internet connection, I had heard of most common and obscure autoimmune diseases, from rheumatoid arthritis to sarcoidosis to Behçet’s.

Dermatomyositis is an autoimmune disease in which your immune system attacks your skin and muscles. It is among the rarest autoimmune diseases on the planet, affecting 16,000 people in the United States and as few as five in a million people worldwide. Dermatomyositis with little to no muscle involvement, such as mine, presents in only 5 percent of those cases.

Dermatomyositis makes only one appearance in all eight seasons of House: a passing suggestion from Dr. Lawrence Kutner when the team tries to figure out what killed former team member Dr. Amber Volakis (Season 4, Episode 16, “Wilson’s Heart.”). Of course, Dr. Kutner is wrong. I can’t help, however, thinking the writers missed a great opportunity for a final, correct diagnosis for another episode.


Hydroxychloroquine staves off dermatomyositis symptoms

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Hydroxychloroquine (Plaquenil) staves off my dermatomyositis symptoms far better than I thought.

Hydroxychloroquine is cheap, relatively safe, and controls the heart and muscle inflammation associated with dermatomyositis.
Hydroxychloroquine is cheap, relatively safe, and controls the heart and muscle inflammation associated with dermatomyositis.

Hydroxychloroquine controls heart and muscle inflammation

This past weekend, I ran out of hydroxychloroquine, an antimalarial drug used to treat autoimmune diseases. By Monday, my heart started racing and palpitating. My lungs felt constricted. Both felt like they were on fire. My throat seemed to be closing, as though I had a piece of food stuck in it.

Doctors call these symptoms myocarditis and dysphagia, respectively. Basically, along with my skin and skeletal muscles, my immune system is attacking my heart, diaphragm, and throat muscles. Oddly enough, clinical tests show nothing. My resting heart rate is a healthy 55 beats per minute. My breathing tests were normal.

I also could hardly concentrate. Much like when you have the flu or are weight lifting, all you can think about is your body’s stress and pain. Much like when you feel anxious or drink too many double-shot espressos, your racing heart makes it tough to read and write.

I forgot all of these symptoms and have not experienced most of them since I started treatment in August. Because I mismanaged how much hydroxychloroquine I had left, they returned within 24 hours of exhausting my supply.

When refilling a prescription is worse than managing a proposal

Trying to understand refill procedures with my local pharmacy is like trying to communicate with project managers building the Tower of Babel.

Speaking of the ancient world, to remedy the situation, the pharmacist sent my rheumatologist a fax for the refill.

As a Denver Broncos fan, I know all too well the dangers of faxing in the 21st century, so I sent my rheumatologist a message through his online portal Monday. No response. I called the office Tuesday. His medical assistant’s voicemail says she will call back within 24 hours. She did not.

By Tuesday evening, I gave up and phoned my dermatologist, who is always on top of things. Within 45 minutes, the pharmacy cleared my refill.

Treating autoimmune diseases with hydroxychloroquine

Today, after taking 200 milligrams of hydroxychloroquine last night and this morning, my body is returning to normal. No more heart and lung issues. My throat feels less swollen. I will not mismanage my prescription again.

First developed in 1955 for treating malaria, hydroxychloroquine is the first-line treatment for dermatomyositis and lupus. Compared to other immunosuppressants, it has few side effects and is so safe pregnant women can and do take it. Better still, it costs next to nothing; even without insurance, a month supply is less than $25.

The only downside is long-term use of hydroxychloroquine can be toxic to your eyes. To make sure nothing like this happens, I take the recommended daily maximum dose and have an ophthalmologist as part of my care team.

Finding beauty and inspiration in feeling overwhelmed

Posted on Posted in autoimmunity, existentialism, inspiration, writingTagged , , , ,

Today was tough. I felt overwhelmed. I’m trying to manage an autoimmune disease and four proposals at once. I itched more than usual this week. My hair has started to quickly thin. My rashes flared up. To top it off, dumbass drivers clogged Phoenix roads with accidents, turning a 20-minute drive into a 45-minute commute.

Caspar David Friedrich - Wanderer Above the Sea of Fog
Caspar David Friedrich’s “Wanderer Above the Sea of Fog” depicts man above the choppy seas, as though to say, “I can and will conquer whatever chaos may come.”

For the first time since being diagnosed, I wanted to give up. I didn’t want my life to be going from doctor to doctor, lab to lab, spending every penny I have on increasing insurance copays only for doctors to basically say the same thing week after week until the medications show results.

I’m collecting specialists like preteens collect Pokemon. At first, I thought this could be fun. Like a grueling sports practice, fun has turned into work.

In the past three weeks, I saw a dermatologist, two rheumatologists, and a psychologist. A radiologist reviewed my CT scan. Pathologists analyzed my blood. Thursday, I see my psychiatrist for my ADHD medications. I made an appointment with an ophthalmologist to monitor my retinas because of known side effects from hydroxychloroquine (Plaquenil). Next week, I have an electromyograph (EMG) with a neurologist at Mayo Clinic.

I’m collecting medical specialists like preteens collect Pokemon. At first, I thought this could be fun. Like a grueling sports practice, fun has turned into work.

Turning despair into inspiration

I want more from life. I want friends and strangers to see me not as some guy who battles an incurable illness, but as me—a writer, a thinker, a proposal specialist, an amateur saucier, a wine connoisseur.

I try not to focus on the difficult parts of my life. I try to borrow strength from overcoming my past.

This evening, I channeled my negativity and hammered out almost a thousand words in my new novel, even if they were about my character’s obsessions with Russian vodka and marijuana politics, about him being stood up by a strip-club cocktail waitress.

Writers and artists teach us how to make things beautiful, attractive, and desirable even when they are not.

Writing is what I do. For over fifteen years, it’s what I’ve done when the future seems grim, especially when I feel down. Besides, inspiration has to come from somewhere.

As the philosopher Frederich Nietzsche comments in The Gay Science, art and artists, including writing and writers, teach us “how to make things beautiful, attractive, and desirable for ourselves [even] when they are not.”

Diagnosis confirmed: amyopathic dermatomyositis

Posted on Posted in amyopathic dermatomyositis, autoimmunity, dermatomyositis, dermatomyositis, lupus, symptoms, treatmentsTagged , , , ,

After three weeks, seven vials of blood, one vial of urine, and a computer tomography (CT) scan, my doctors have once again confirmed I have dermatomyositis.

Yet in true House episode fashion, this is an atypical presentation of dermatomyositis, called amyopathic dermatomyositis. In this instance, my skin itches, burns, and aches from the rashes on my arms, shoulders, and chest. But my muscles have not wasted enough to diagnose me with myositis.

Underneath my skin, my aldolase levels are still elevated. My breaths are sometimes shallow. I lost some muscle weakness. (But this could just as easily be all the corticosteroids I have been taking.) And my creatine kinase levels, which would indicate systematic muscle destruction, are within normal range.

Apparently, my body has decided having a very rare autoimmune condition does not make me special enough. According to Callander, Robson, Ingram, and Piguet, amyopathic dermatomyositis affects only 5‒20 percent of dermatomyositis patients. Doctors have only known about the condition since the early 1990s.

Good news at last

For the most part, this is great news. Exagen’s AVISE® test confirmed I do not have lupus, which can affect multiple organs. My urine and blood tests ruled out any kidney or liver damage. Functional muscle strength means I can maintain the quality of life I want.

However, amyopathic dermatomyositis is more likely to affect my lungs. Since my CT came back normal, for now, my doctors are not concerned. But interstitial lung disease remains a possibility. My immune system may also decide to begin attacking my muscles more severely.

My doctors and I will continue to monitor my disease. My rheumatologist has prescribed hydroxychloroquine (Plaquenil), an antimalarial drug used to combat autoimmune diseases. He has also started tapering down my steroids. And my dermatologist gave me a large tube of fluocinonide cream to keep the itching at bay.

Sometimes, being medically special is a good thing. A smile has returned to my face.