Autoimmune patients taking methotrexate must avoid alcohol, according to most rheumatologists. So too say the makers of Otrexup (subcutaneous methotrexate). I messaged my doctor to double check: He agrees abstinence is best.
Not everyone agrees. Newer studies are changing some rheumatologists’ opinions. Many now say rheumatoid arthritis patients may consume alcohol in extreme moderation; in other words, a couple drinks a week is fine. Psoriasis patients, however, should avoid it.
So, where does that leave me? Since methotrexate is used off-label to treat dermatomyositis, all research on methotrexate and alcohol concerns psoriasis and rheumatoid arthritis patients. I can only trust my doctors and look at anecdotal evidence from other dermatomyositis patients.
Many myositis patients on online bulletin boards ignore doctors’ advice. “Live life!” they say. Others were told by their doctors a couple drinks a week is okay—just not on the same day as your injections.
One current complication for me is I am on prednisone and methotrexate. Both are hard on your liver. In fact, I can feel my liver throughout the day yelling at me. For me, until I get off the corticosteroids, alcohol is probably best avoided.
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’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.”
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.
I manage and help write proposals at a university placed by the Times Higher Education in the world’s top 1 percent. Few places on earth are better for studying and advancing research in industrial, computer, electrical engineering; materials science; earth and space exploration; and biotechnology.
In doing my job, I see even before other academics and researchers how the world’s best scientists and engineers expand the frontiers of their chosen fields.
One engineer has a method for getting rid of dendrites in lithium batteries. I cannot say anymore than that, but in short, he and his partners know how to overcome one of physics and chemistry’s biggest obstacles to higher-capacity, longer-lasting lithium batteries in smartphones, drones, laptops, and electric cars.
A team of biochemists is folding nucleic acid nanostructures into geometrical shapes that can be used to reinvent biology on a nanoscale. Some day soon, they may be able to fold DNA and RNA—nature’s genetic instructions for life to grow, develop, function, and reproduce—into cures and treatments for cancer and infectious diseases.
My hope is they or someone else uses such methods to invent a cure for autoimmune diseases like dermatomyositis.
Living on the edge of what’s possible in modern medicine in a chaotic world seemingly controlled by corrupt institutions can be discouraging. Not knowing what cures and treatments await me induces as much anxiety as simply having the disease and as much frustration as dealing with hospital and insurance bureaucracies.
But it helps knowing such people are out there, looking at ways to improve humanity and society, to make our lives easier, is encouraging—especially for those of us waiting for a miracle.
