Tag: hydroxychloroquine

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.

Rough weeknights and coping with chronic fatigue

Posted on Posted in autoimmunity, dermatomyositis, dermatomyositis, inspiration, symptoms, writingTagged , , , , , ,

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?

Dermatomyositis makes breathing difficult

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

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.

Hydroxychloroquine staves off dermatomyositis symptoms

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

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.

Time to add methotrexate

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

My rheumatologist and dermatologist agree with the Mayo Clinic dermatomyositis guru: After ten weeks on hydroxychloroquine, with few results, I need to add methotrexate and folic acid to my regimen of medications and supplements.

Otrexup: subcutaneous methotrexate
I’ll now be injecting myself with methotrexate in the thigh once a week with a cartridge that looks like a Soviet torture device. And I’ll be taking one milligram of folic acid every day—2.5 times the amount pregnant women take to stave off birth defects.

Methotrexate suppresses the body’s immune system. Developed in the 1940s as a chemotherapy agent to treat cancer, in low doses, studies and clinics have shown it effectively treats many autoimmune disorders. It’s a first-line treatment for rheumatoid arthritis and a second-line treatment for psoriasis. (Interestingly, it also used to induce abortions.) The drug is affordable, generally safe, and well tolerated by autoimmune patients.

Only time will tell whether or not the methotrexate relieves any of my rashes and itching. Medical journals show mixed evidence of its efficacy. In this dermatology study, only 1 of 4 patients with amyopathic dermatomyositis, in this one, only 2 of 3. However, this 1998 study showed it helped all 13 patients, whether they had muscle involvement or not. This 2011 study also found methotrexate reduced skin lesions in 8 of 11 patients.

Risks of Methotrexate

Liver toxicity is a risk of taking methotrexate. Though most of the above studies tout few adverse effects, one cancer-dermatomyositis patient had hair loss. These doctors observed psoriasis and dermatomyositis patients are at higher risk to liver damage than those with rheumatoid arthritis.

That said, methotrexate side effects are much more common in cancer patients. They take much higher doses of it than autoimmune patients. Brain damage is a real possibility for them.
 
I talked to all three of my doctors about side effects and risks. All three say the medication is generally safe and not to worry. Issues listed online and discussed in medical journals mostly affect autoimmune patients also battling obesity, drug or alcohol misuse or abuse, or cancer.
 
I will need regular blood tests to check for early signs of liver toxicity before the drug causes irreparable damage.

 

Itching and burning and the rashes from hell

Posted on Posted in dermatomyositis, existentialism, kyphosis, Scheuermann’s disease, symptoms, treatmentsTagged , , , , , ,

The severe itching has returned. My arms are inflamed and covered in rashes that resemble first degree burns just before they turn into blistering, second degree ones, that vivid ruby rose color that looks like I feel asleep in the Arizona sun. I feel like a shell of the creature who was once called a man.

Today marks week five since I started taking hydroxychloroquine. It is not yet working. I try to stay optimistic, to remind myself many patients only notice effects after six weeks, most notice nothing until months later. But until then, am I supposed to live in hell?

Meanwhile, my primary rheumatologist has been tapering me off steroids, slowly reducing the dosage to keep my immune system from overreacting. Taking corticosteroids for more than a few months could cause damage to my immune and endocrine systems.

Must I choose between damaging my body years from now and living in this itching, burning hell? Is the price of a quality life today a shorter tomorrow?

Some evenings, I curse my doctors’ treatment plan. Other evenings I curse myself. Others still, I curse whatever natural or supernatural entity decided I must suffer yet again, as though Scheuermann’s disease wasn’t enough, as though ADHD and depression haven’t been enough, as though life isn’t already hard enough. What kind of being would cripple his creation with a rash that makes you wish you were dead?

In reply to some twisted medical corollary to French mathematician and philosopher Blaise Pascal’s famous wager, I told my girlfriend I would gladly trade a long life in hell for a short one in paradise.

Must I make this choice?

To quote Djimon Hounsou’s character in Gladiator, Juba, “Not yet, not yet.”

One more week. Can I make it? Yes, but will six weeks be enough?