My Mystery Rash

mystery rash story
What could be causing this rash?
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Until I was 58 years old, my skin was pretty much perfect. If I had a nickel for every admiring compliment, I wouldn’t bother buying lottery tickets. Things changed the summer I went to a dermatologist because of a mysterious rash and some even more mysterious bumps.

Let’s call the guy Dermatologist Number One.

“I’ve got this odd rash,” I told Number One. “It’s annoying, and it’s been spreading over my legs and back for about a month. Plus, look at these bumps on my arms. They’re hard and red, and they itch fiercely.”

“The bumps are insect bites,” Number One said dismissively. “Here’s some cream for the rash.” He was gone in less than 60 seconds.

Sigh. I went home, kicked the cat outside, and flea-bombed the house, just in case. The bumps didn’t go away, and neither did the rash. I was too busy that summer to worry about it much, but eventually the scratching became tiresome and I decided to try Dermatologist Number Two. He was well past retirement age but sharp as a tack. He listened carefully, inspected my skin from top to bottom with a magnifier and light, then said the rash was being caused by gluten intolerance.

It didn’t occur to me until a few days later that Number Two had not mentioned the itchy red bumps. I was just relieved to find a doctor who listened and delivered a believable diagnosis. It was research time. I gave up wheat, soy sauce, and salad dressings entirely. Learning to love brown-rice pasta was a stretch, but I managed it. A gluten-free bakery even yielded an acceptable pizza crust. I called the manufacturers of my medications for a gluten check. For the next year, compliance was the watchword.

Number Two had also prescribed a steroid cream that was good for about 12 hours of itch relief, but neither the rash nor the bumps disappeared entirely. They waxed and waned with no discernible pattern, spreading from legs to back to upper arms to scalp and back again. Sometimes – well, to be honest, frequently – I scratched until blood caked my fingernails and I was crying from frustration and pain. Number Two kept saying sternly that I really needed to stop eating bread.

Dermatologist Number Three was brusque, dismissive, and expensive. He ordered a skin biopsy, then stated I did not have gluten intolerance.

“Well, okay,” I said, “what do I have?”

“I don’t know. There’s nothing else I can do for you. Go away.” Okay, I made up that last sentence, but I’m sure he was thinking it.

More annoyed than ever, I went home and swore off dermatologists. My PCP then suggested I give up all OTC medications (glucosamine, baby aspirin, calcium, and a multi-vitamin) for a month to see if that would help. It didn’t. She also suggested stopping each of my medications for type II diabetes for a month at a time to see if that would help, but I wasn’t willing to try that. I began taking antihistamine pills daily. They made me snore and wake up with pounding headaches, but the rash retreated a little. Sometimes.

Dermatologist Number Four was young and spiffy and enthusiastic.

“What I hope,” I told him after the first appointment, “is that you’ll see this as a fascinating puzzle you just have to solve.”

He promised to do his best, and ordered two more skin biopsies. After a diagnosis of non-specific eczema, he suggested judicious exposure to tanning beds, which he said were very similar to in-office light therapy, but closer to home and less expensive. He didn’t mention the red bumps, either. At the end of 2015 things were no better than they’d been three years earlier. The rash and the bumps continued to spread, retreat, and spread again. My New Year’s resolution for 2016 was to stop spending money on dermatologists.

Things were more or less under control at times. I actually wore shorts that summer, since a tanning-bed glow made the rash less noticeable. I learned that I could shorten the lifespans of those red bumps by scratching off the top as soon as one appeared, and dosing it with antibiotic ointment.

Then the rash spread to my face. Except for a class reunion, when I covered all the visible spots with heavy makeup, I stayed out of public view, thankful to work at home. Later, all makeup and cleansers went into the trash, replaced by natural soap and coconut oil moisturizer. The facial rash eventually retreated. I wouldn’t have bothered with Dermatologist Number Five, but my husband insisted on one more try.

Number Five was eager and curious. “Has anyone ever suggested allergy testing?” she asked.

“I did!” I sputtered. “But the other dermatologists said it wasn’t necessary.”

She shrugged. “It’s the first thing I thought of.”

The test came back positive for caine mix allergy. Caines are a class of drugs that include anesthetics like lidocaine, and guess what else? Also on the list were sulfonylureas, common diabetes medications. I’d been taking a sulfonylurea since 1999.

“Huh,” my PCP said. “That’s easy to fix. Here’s a different prescription.”

Four months after the long-awaited correct diagnosis, I thought the bumps were gone for good. The rash still flared up around my ankles with every shave, and occasionally appeared on my upper arms and elbows, but I could handle it.

Early in 2018, I got tired of handling it, so I got out that allergy list for a second look. One category was named “benzoic acid derivatives.” Hmmmm. Maybe I should take a look at all of my hair and skin products. If I found any of those derivatives, maybe I could clear up the rash for good.

A surprising number of lotions, shampoos, and makeup products listed benzoic acid. To be safe, I also eliminated anything with a -ben- syllable, including sunscreen (which contains paraben). Baby sunscreen, thankfully, does not have paraben. I even bought razors without the moisturizing strips, just in case.

At this point, six years after the rash and itchy red bumps first appeared, my skin is once again clear. The only time I had a minor flareup this year was during an extended car trip when I was using public restroom soap all day long.

I’ve asked myself if there are any lessons to be learned from that long and miserable experience. We’ve all heard about taking charge of our own health, being proactive, doing the research. Try as I might, though, I still just want a doctor who can solve the problem. Period.

The lesson – the really unpleasant lesson – is that we, as patients, are shooting in the dark. We have no way of knowing which physician is better for us than others. Physicians aren’t necessarily smarter than anyone else when it comes to solving a puzzle and dispensing the single best advice, so it takes time and patience to find a winner. My husband was right to want me to keep trying.

How could the process have been made better? I should have been more demanding, should have gone back to Number One and said, “You’re not helping. Try again. Do better.” Failing that, I should have insisted that any one of the subsequent Numbers do allergy testing, when my gut told me that was probably the next best step to take. Instead, I believed they knew better than I did. I won’t make that mistake again.                                                                                                                                                                                


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