Shedding My Skin

I had a severe autoimmune reaction to the COVID vaccine, but took one for the herd

Sometime after my second or third COVID vaccine I noticed a weird crusty spot on my back. Concerned, I went to see my primary care doctor, who said it was just an age spot—I’d recently turned 60—and since I’d had a few barnacles before, not to worry. I didn’t mention that my inner thighs were also red and irritated, because I figured that was from taking a 40-mile bike ride without chamois shorts. Before I left the doctor’s office, I got a shingles shot.

I woke up the next morning feeling woozy. It was a reaction to the vaccine, I thought, but tested for COVID anyway. Positive. I had a brief fever and then my entire groin area erupted in a red rash. I sent a photo to my doctor, who this time diagnosed jock itch and prescribed fungal cream. Strange to have so many weird symptoms on top of COVID, especially when I’d never had athlete’s foot or any other kind of fungus that I knew of. In another two weeks, the COVID was long gone, but the rash was creeping down my thighs, marking its territory with angry red spots that spread into raised plaques with silvery scales.

The rash clearly wasn’t jock itch, and it was feasting on my body with abandon. It felt out of control, something I had little experience with, in my body. Through some combination of good genes, broccolini and dance classes, I’ve always been very healthy—as are most people, I suppose, until they get sick.  I was tempted to just wait until the rash went away, like most things do that don’t kill you, but my husband insisted I send the doctor another photo. This time she sent the photo to a dermatologist, who suspected psoriasis and booked an appointment with me, two months away.

I’d always thought the “heartbreak of psoriasis” was an exaggeration. Until it broke my heart.

Impatient, I went to Mexico, where I live part-time, and saw a dermatologist the day after I arrived. She biopsied the weird spot, diagnosed psoriasis, and gave me a couple of medicated creams that I delicately dabbed on the red plaques. “You’re going to need a dermatologist in the States,” she told me, which was ominous, since I thought her medicine would do the trick.

While in Mexico, I ran into an acquaintance who considers himself a shamanic healer, as do a fair number of guys in their 30s there who smoke a lot of weed and take psilocybin in all-night sweat ceremonies.  I was skeptical of his healing abilities, but body plagues make things like shamanic healing suddenly seem quite sensible. He concocted a paste that looked and smelled like pesto to rub on the psoriasis, and prescribed that I sleep with it on my skin. Unwilling to ruin my sheets, I walked around with green patches on my arms and legs during the day, smelling strongly of garlic.

Neither the ointments nor the pesto worked. Every evening I slathered every spot, to no discernible effect. The spots started running together, becoming big islands in the sea of my skin, and then continents.

Once back in the States, I bought all the psoriasis soaps, shampoos, salves, creams, and books I could find online. My primary care physician suggested light therapy, so three times a week I rode my bike across town to wait in the waiting room, fork over my credit card for a $78 co-pay, then strip down and step into a capsule filled with fluorescent light bulbs to burn my flesh for a minute or two. One of the nurses suggested I might need to buy one of those fluorescent capsules for my home if thrice-weekly treatments didn’t work since my psoriasis was “so severe.” If I hadn’t been in a hospital, I would’ve thought this light treatment made about as much sense in treating psoriasis as shamanic pesto.

I made several appointments with an acupuncturist and added Chinese herbs to my routine. She put me on an anti-inflammatory diet, cutting out dairy, sugar, gluten, nightshades, coffee, and other foods that make life worth living, then reintroducing them one by one to see what was irritating my psoriasis. She also suggested no alcohol, but the frustration of psoriasis called for a drink. My red scales spread.

The only thing that really seemed to help was swimming in the frigid San Francisco Bay without a wetsuit, which basically froze my itching sensation.

The daily routines of herbs and ointments began making me feel oppressed by sickness and its routines. The only thing that really seemed to help was swimming in the frigid San Francisco Bay without a wetsuit, which basically froze my itching sensation. I’m not a person who gets depressed, and I was depressed. The ointments ruined my clothes, as did my constant bleeding, so I wore only cheap turtlenecks and ragged pandemic sweats, which I had to launder after every use. The psoriasis on my scalp created crusty areas that shed in clumps with a lot of hair attached, so I wore a lot of hats, too. My entire body had dandruff, which I swept up every day into little grey piles of skin.

Psoriasis is an autoimmune disease that causes your body to produce up to ten times the normal amount of skin. When your body undergoes a variety of immunological insults – COVID vaccines, shingles vaccine, or COVID, say – your immune system fights back with its entire arsenal. That includes the cytokine that tells your body to spew out skin, which you’d want if, say, you’d been in a knife fight. In my case, skin piled upon skin where the only wound was my vanity.

By November, the psoriasis had spread across my entire body, sparing, thankfully, my hands and most of my face. My husband told me, rather unhelpfully, that if these were medieval times, I’d be shunned. “They’d treat you like a leper,” he said. My face screwed up. “But I’d still love you, no matter what.”

I know, it’s gross, but here’s what covered 80% of my body. My husband told me that in medieval times, they would’ve treated me like a leper and shunned me. Thank you, dear.

My U.S. dermatologist suggested via email that I try methotrexate, a heavy-duty cancer drug that would suppress my entire immune system and had a laundry list of bad side effects, like cancer. This was a shocking suggestion since I rarely even take an Advil.

I went back to Mexico, where I live part-time, to try some other alternatives before deploying the big pharmaceutical guns. My friends there, some of whom did not get COVID vaccines because they believe they cause other illnesses, insisted that it was the COVID vaccine that gave me psoriasis. Or the shingles vaccine. Since they also insisted that colonic irrigation would help, I didn’t know what to believe.

I was always pro-vaccine, dutifully getting every recommended shot, even if they caused a few side effects. You have to be willing to take one for the herd, I figured. That may be the defining characteristic between rabid anti-vaxers and those who feel they should be universally deployed: individualism versus a sense of responsibility to the community. A lot of the problems associated with vaccines have turned out to be myth, of course, such as autism. Kids in Florida are dying of measles because anti-vaxers are not only endangering their own children but all the kids around them. And the people who are most vocal about vaccinations, turning them into conspiracy – the Naomi Woolfs and Robert Kennedy, Jrs. of the world, not to mention the Trumps—are doing it to rev up their personal brands by inciting individual outrage.

And yet. I come from a medical family and have written a lot about medicine. I turned to the medical literature, and while I found only a few published cases of COVID- or vaccine-induced psoriasis, I wondered who was keeping track. My doctors certainly didn’t turn me into a case study.

I wrote to an immunologist I had worked with in the past with my question about COVID vaccines and psoriasis. “Psoriasis does become worse during and after a COVID-19 infection,” he wrote, adding “psoriasis can become worse after the mRNA vaccine.” He gave me references to medical articles on new onset and exacerbations of psoriasis following COVID-19 vaccines, and another of case studies of COVID and psoriasis (below).

It seemed there was some truth to the idea that the vaccine, or vaccines, overwhelmed my immune system. About that, my anti-vaxer friends seemed right. Maybe, then, there was some truth to the alternative therapies that they espoused. I felt pulled between two warring systems of western and alternative medicine, neither of which seemed to talk to the other. My US doctors even rolled their eyes a bit when I suggested that acupuncture might help. The systems of medicine are as polarized as the political debate over vaccines, with human bodies caught in the middle.

The systems of medicine are as polarized as the political debate over vaccines, with human bodies caught in the middle.

Anyway, I was desperate for a remedy, and like a lot of people in that situation, I visited the far fringes of alternative medicine. I  first went to someone I’ll call Dr. Rick, a naturopath. He hooked me up to a machine, holding a couple of metal rods, like a heart rate monitor, which he said can diagnose 9000 conditions. In a few seconds it told him that my condition was the Simian-40 virus, which, from what I could tell from later research, has zero to do with psoriasis. (From what I could tell later, he got his degree online). He suggested that I take a bath in a cup of salt and a cup of baking soda.

“Anything else?” I asked. I wanted to know about diet, supplements, something that might get to the root of the problem. He said no, just take the baking soda bath.

“That simple?”

“That simple.” Then he charged me $150 – dollars, not pesos.

I hunted all over town for a bathtub, which hotels were reluctant to rent by the hour. A friend finally offered me the use of her tub, and the baths were soothing and lessened the redness temporarily. As soon as I toweled off, the psoriasis came raging back.

I tried a homeopath, who gave me little sulphur sugar pills. He said it might get worse before it got better, a healing crisis. It did get worse. It did not get better.

I tried another naturalist, who gave me handfuls of supplements to take, expensive even in Mexico.

Finally, I stopped at the mercado to see what traditional medicines the Huichol healers offered. They gave me some herbs to calm down nervousness, which agitates psoriasis, as well as some cream made from a tree that is supposed to work on skin issues. Plus: rattlesnake soap.

I actually bought snake oil.

I’m usually tough about physical issues, never flinch and rarely complain, but I finally cried in frustration with it all, that I will have to live with this for the rest of my life, slathering on creams and leg makeup and covering myself up in monkish clothing. The lesions on my bottom were so painful I couldn’t sit down long enough to work. My skin was so sensitive my husband couldn’t touch me. The itching was so torturous, especially at night, that if a Benedryl didn’t help me sleep, I’d masturbate like a bonobo just to have a more overwhelming sensation.

I’d long planned to go to Cuba after Mexico, on a dance retreat, and didn’t want to cancel. We danced three sweaty hours every morning in a hot, humid atmosphere that made my psoriasis flourish, and then went out dancing at night. Cuba is not a place where you want to cover your entire body in long pants and turtlenecks. Partner dancing is something you don’t want to do if you look diseased, though I assured all the salseros I wasn’t contagious, and they were kind. I wore long gauzy white garments to cover up and, because sun is good for psoriasis, took my mottled body to the beach. The people in my group were supportive, and one said my body looked kind of cool, like I’d gotten sunburned wearing an abstract cut-out shirt. But strangers on the beach pointed and whispered.

It puts your concerns about chubby thighs in perspective when they are dappled red, flaking, and bleeding.

I’ve had body issues all my life, having grown up in a fat-phobic family, but I’ve never had issues with my skin. I escaped adolescence without acne. People have complimented me my whole life about my beautiful skin. I only had a skin problem once, when I got hives on a flight to Italy, where kids pointed at me and shouted “brutta!” (ugly). Now my entire body was brutta. It puts your concerns about chubby thighs in perspective when they are dappled red, flaking, and bleeding.

When I came home, the psoriasis was so out of control it looked like someone had sloppily painted my entire body with clay-red paint, which was cracking and flaking. I couldn’t tell my aureoles from the rest of my breasts. I was going through a jar of moisturizing cream a week. I finally got in to see a US dermatologist, who gave me an emergency steroid shot, a prescription for a tub of steroid cream, and suggested I go home, slather I all over my body, then put on wet clothes to make it penetrate. That clammy regime kept out of the hospital.

After all the other remedies, FDA-approved and not, the dermatologist finally offered me a medicine that targets psoriasis — not methotrexate, which targets everything.  I started a biologic medicine that finds and destroys the offending cytokine IL-17A to prevent inflammation and skin proliferation. The co-pay was a whopping $4750, which I managed to get partially reimbursed. I was so eager to inject myself I didn’t even count to three before plunging the needle.

The biologic drug, made from living bioengineered antibodies, just came on the market last year, and it appears to be working. When I started the injections, I also went on that anti-inflammation diet my acupuncturist recommended, which cut out just about everything but vegetables, fish, lean white meats, nuts, seeds, whole non-glutenous grains, and olive and coconut oil. I don’t know if it was the drug or the diet — there’s no control me — but the psoriasis started to recede. Within a month, it was at about at 25% of what it was, leaving only dark spots to remind me of where it had itched. Now my skin has only one tiny piece of psoriasis remaining on my inner thigh, to remind me that it’s lurking.

I’m back to feeling healthy and robust, but like other people who suffer an out-of-the-blue illness realize, I feel more at odds with my body, with a newfound vulnerability, a sense of how one accident or fall or immunological mistake can change everything.

I unwittingly inserted myself into the vaccine wars.

I also unwittingly inserted myself into the vaccine wars. When I tell people about my bout with psoriasis and show them the awful photo of my mottled back as proof, they are sympathetic until I tell them that I likely got it from the COVID vaccine, exacerbated by the shingles vaccine and perhaps COVID itself. There’s no real way of knowing, but I do know that before the vaccines and COVID, I’d never had psoriasis, and thought the “heartbreak of psoriasis” ads on TV were exaggerations. They were not.

Then, despite the evidence of my painful psoriasis, sympathy fades and I’m suddenly under suspicion for being an anti-vaxer. To be clear, I believe COVID vaccines have done a lot more good than harm. A recent NYT article on the side effects of the vaccine concluded that while some people, like me, do have serious side effects, overall, the benefits of COVID vaccines have far outweighed the downside. “In the U.S. alone, the vaccines have saved at least several hundred thousand lives and perhaps more than one million, studies estimate. Rates of death, hospitalization and serious illness have all been much higher among the unvaccinated than the vaccinated.”

But I have changed my tune on thinking that everyone should have a vaccine in order, say, to travel. Epidemiology is for the group, and individuals vary. As with pronouncements made based on epidemiologic evidence — being overweight makes you die early, for instance — individual cases can and do vary. I’m an outlier, I suppose. But I’m definitely never having another COVID vaccine, nor another shingles one. In a black-and-white world of vaxers and anti-vaxers, I’m grey. I’m not on the side of individual freedoms at the cost of the community, but I do believe, for my individual body, mRNA vaccines don’t seem to be a good idea. Things can’t always be so black and white.

The same is true of western versus alternative medicine. It’s ridiculous that so many treatment modalities that have been proven over time to be effective, such as acupuncture, are not more whole-heartedly embraced by physicians. Nor does it make sense that the herbs in Chinese medicine aren’t studied while the herbs in western medicine are stolen from their traditional habitats in South America and patented for pharmaceutical companies. There’s no Big Pharma money backing clinical studies of most types of alternative medicines, so therefore “evidence doesn’t exist.” Anecdotal evidence shows that anti-inflammation diets can improve things like psoriasis, but few doctors know anything about nutrition to begin with, and few people fund those studies.

What happens in the void between the two sides is that people get lost in the middle, wasting money on fringe treatments, not realizing that not all alternative practitioners are created equal. They waste time, too, with AMA-sanctioned treatments because managed care decrees that they must go through the hoops of primary doctors and waiting periods and lesser treatments to get the remedy that will actually help. More and more we have no one to trust, and are left to our own devices, diagnosing ourselves on the internet and haphazardly trying remedies for whatever ails us. People are mad, and so it’s no wonder that anti-vaxer rhetoric is spreading like a virus.

More and more we have no one to trust, and are left to our own devices, diagnosing ourselves on the internet and haphazardly trying remedies for whatever ails us. People are mad, and so it’s no wonder that anti-vaxer rhetoric is spreading like a virus.

I hope, when necessary, most people still get vaccinated. I also hope I’ll eventually be able to wean myself off the biologic drug, which suppresses my immune system and makes me more susceptible, ironically, to COVID and other respiratory illnesses. Maybe it has gone away and will stay away. If not, I’ll try to control it with a sensible regime of some supplements, exercise, a clean-living diet, and maybe acupuncture. If it comes back, I’ll get back on the drugs and thank God for biotechnology. But I’m not going to generalize from my personal experience and suggest that anyone avoids COVID vaccines like I do.

Along with all the other insults of aging, I’ll always have to deal with psoriasis, and the risk that it will come back, forever fretting about that fickle organ that encases the sausage of my body.

References: New onset and exacerbations of psoriasis following Covid-19 vaccines: a systematic review. Am J. of clinical Dermatology 2022, vol 23.  775-799

Clinical characteristics and outcomes of patients with Covid19 and psoriasis.  J Medical Virology, 2022, 12: 5850-5857

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