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Rosacea/Perioral Dermatitis for a Year and at a Loss

Rosacea/Perioral Dermatitis for a Year and at a Loss

Hi, everyone. I’m going to try to shorten my story as much as possible with the hopes that all those of you with knowledge (I’ve been lurking for a while now!) might be able to help me brainstorm what’s going on. It’s long, so I’ll give a TLDR at the end.
14 months ago, a hydrocolloid acne patch resulted in a slightly raised, red, rough/scaly patch of skin about the size of a dime on my cheek. After a month of trying various at-home remedies (vaseline, aquaphor, etc.), my GP prescribed Elocon. I did exactly as told, used the Elocon on that spot for about 8 days, everything was back to normal, and I was delighted.
About two weeks later, my whole face broke out in hives. I went to a Minute Clinic and was prescribed a 1-week course of prednisone with instructions to reevaluate the products I was using. My face went back to normal. I did not connect this with the patch or the Elocon.
About ten days after I stopped that course of prednisone, my face broke out in a new type of rash. I would describe it as red plaques–much like the first dime-sized spot, but now all over my face. I went back to my GP, who had no idea what it was, prescribed a Medrol pack and a fungal cream just in case, and had me go to a dermatologist. The dermatologist immediately diagnosed perioral dermatitis and prescribed metronidazole. I didn’t realize it at the time, but I’m allergic to metronidazole. Within a few days, my face was puffy and covered in hives. I went back to a GP, who told me it was definitely an allergic reaction, and gave me another, longer, higher course of prednisone and a short and high dose of doxycycline because he couldn’t rule out an infection. Everything was fine again.
At a follow-up with the dermatologist in the midst of that course, he took a biopsy of the worst part of the rash. I was told the biopsy confirmed eczema and I could use the Elocon (on my face!) for two weeks at a time with one week off…indefinitely. I did so, but after a couple months of this (I never used it as much as he suggested–perhaps 4 days on, one week off, for 2-3 months) and doing some research, I got uncomfortable with continuing to put the steroids on my face. I stopped the Elocon and went to a new dermatologist to discuss. She went back to the perioral dermatitis diagnosis and prescribed me metronidazole and doxycycline.
…That’s how I discovered I was allergic to metronidazole, since I had the same terrible face-puffing-up, covered-in-hives reaction. I needed another week of prednisone to get it under control, and we decided to switch to Elidel. I was to continue taking doxycycline, but I found out I was pregnant, and my OB had told me to stop the doxy as soon as I got pregnant. I continued with the Elidel for a few months, and it worked great, but I noticed two things: first, if I ever stopped applying Elidel for more than a day or two, I would break out in little bumps; second, if I had even a DROP of alcohol (and I mean a drop–I’m pregnant, so this means simply a sip of my husband’s beer at dinner to taste), my entire face turned bright red and burned.
That brings us to the beginning of this summer. I explained my concerns to my new dermatologist, she was incredibly understanding, and she suggested we try clindamycin lotion for now. I used that for a month, but the redness and bumps persisted–no longer the red plaques, now my face resembled a rosacean face for sure. When I went back, she suggested Soolantra and I mentioned a bunch of research I had been doing about pulse therapy with azithromycin for rosacea. We read some papers together, and she prescribed an 8-week course of azithromycin, three times a week.
The Soolantra, after a bit of a rough start, has completely cleared the papules and pustules, and I experienced pretty much exactly what everything I read had described over the first few weeks. I feel relatively certain that the steroid use and Elidel use contributed to a demodex outbreak which is now under control. Yay!
On the other hand, I still have some of those plaques. We looked at the results of my biopsy from the fall together, and noted that it indicates “seborrheic dermatitis or rosacea.” So my dermatologist suggested I try sulfacetamide lotion. This was a few weeks ago, and made my skin burn like hell, completely red all over, and it was generally terrible. I tried some of the ketoconazole cream I had left on the patches, but that either did nothing or irritated them more.
Cut to two weeks ago, when I was diagnosed with a sinus infection. I was on amoxicillin for 7 days. Three days into that course, I marveled at how amazing my skin was looking, which I attributed to my now-8-weeks-in with Soolantra experience coupled with my use of some Promiseb (Sebclair) on the red patches. It was also my last week of 3-times-a-week azithromycin. I declared myself cured–it was the Soolantra and Sebclair together that were finally working! Amazing!
Three days ago, about two days after my amoxicillin course was over, I started developing red patches again, this time exactly where perioral dermatitis would be–all over the top of my chin near my mouth, and in the nasal folds where you might see seb derm. It’s bad, guys. It’s red, inflamed, scaly, itchy, painful. I can’t go out anywhere; I look terrible and I feel terrible. There are no pustules or papules, just general redness in those spots. The Promiseb now seems to be making those parts worse, and nothing is making them better. I’m not using anything except Vanicream cleanser once a day and Soolantra twice a day. I’m at a loss; I feel completely hopeless. I go back in about 9 days to follow up with my dermatologist (I might try to get in sooner if this persists), and I’d like some sort of plan. I know she’s at a loss, too. I can’t take doxycycline because I’m pregnant. Is it possible the amoxicillin helped? Could I be on that for a longer stint while I repair my skin barrier and then try to wean off? Is there some topical we haven’t tried? I want to cry most of the day because I’m so uncomfortable, and forget about social plans.
TLDR: Soolantra, which I’ve been on for 8 weeks, cleared what I think was steroid-induced rosacea, but now I have symptoms of some type of (perioral?) dermatitis remaining that is seriously affecting my quality of life. In retrospect, I was totally clear for 7 days last week while I took amoxicillin. I’m pregnant. I’m allergic to metronidazole. What the hell do I do?

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Reporting back after hospital clinic and taper regime

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Reporting back after hospital clinic and taper regime

Having limited response to nearly four weeks of 20mg Prednisone, I was referred to the hospital’s medical assessment and planning unit this week Tuesday by my GP. My prednisone was temporarily increased last Saturday to 60mg plus omeprazole for stomach protection on the advice if the hospital medical consultant . No change first day on the 60mg however the next three days I had no pain or stiffness though feeling weirdly hyped and slow at the same time. The clinic came up with probable PMR and sent me home with the following taper regime. ” 5 days × 40mg, 5 days × 20mg then 5 days x 15mg then reduce by 1mg each 1-2 weeks until stopped. If symptoms reoccur repeat CK and consider referral to neurology if raised ? Immune induced myonecrosis. If not raised refer back to medical for review” Bloods CK 39, CRP 10 down from 25, ESR 13, They did an addition blood test for PTH because of ” hypercalcaiaemia 2. 62 slowly rising” that came negative. The suggestion to my GP was referral for CT in that case…not stated where to scan ( or endocrinology if positive). I take the prednisone around 2am with milk and the omeprazole. First day no symptoms, second and third ( today) some slight arm weighedness in the early evening. My GP agrees that the later taper is optimistic. She emailed me tonight to say that we will monitor the calcium along with CPR labs and suggests a blood test prior to each new taper. I’m keen to get off this higher pred. so wonder if it reasonable to expect to be able to get back to 20mg over these 10 days or is that going to be too quick. Also wondering about the Omeprazole. I know some of you just use milk as I was doing. Thoughts, advice welcome. I feel thankful that the GP is very collaborative

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Happiness is neither virtue nor pleasure nor this thing nor that, but simply growth. We are happy when we are growing.
~ William Butler Yeats
Things haven’t been great the last couple of months. They’ve been less than great. Awful, really. Happiness has been an issue for me. The light’s just gone out and it’s something I’ve really struggled with since the beginning of August.
Regardless of whether this is the right forum [probably won’t be] or I give too much personal detail [definitely will], it’s time that I address it.
In a rambling, clumsy, over-worded blog post for the entire world to read.
Obviously.
The Girl – Let’s go ahead and get the elephant in the room out of the way.
When I was in grad school, I met a girl from App State. Up until that point, I was the straight-laced, rule following, stereotypical first born child. This girl was anything but. A free spirited, go-with-the-flow, laissez faire girl. Practically to a fault. She majored in Outdoor Experiential Education. About as close to being polar opposite as one could be. For some reason, through the first half of that year, something just clicked.
Then she worked a summer camp outside of Pisgah National Forest with a bunch of international college kids. We grew apart after a couple of forced visits. We went our separate ways once she started dating one of the British guys and finished the summer traveling the East Coast with the internationals before they went back overseas. Her last stop? The US Open in New York.
That summer broke my heart. In hindsight, it wouldn’t have worked. She made the right move. Her personality was just a little too pie-in-the-sky for what I would have reasonably been okay with. But that unconventional switch in me flipped for good. Because of her. Until the day I die, I’ll credit her for planting the seed that allowed me to be much more comfortable in my own skin and accomplish things like travel the country on my own years later. I’ll forever be appreciative of and grateful for the lessons I learned. Because of her.
Fast forward 11 short years and a number of girls who wound up in my rear view mirror. Or me in theirs. Girls who moved too fast. Girls who were too dependent. Girls who were too different. Girls not on the same page. Too many round pegs. Too many square holes. Mistakes, regrets, and resentments aplenty. No one scratched that itch.
Then May 2018 happened. Upside down went my world again.
There are the superficial, shallow, warm-and-fuzzy things. She’s tall. She has the best name. She absolutely rocks the natural, unkempt wavy hair. She isn’t afraid to eat hot dogs. She’s a fan of nearly any genre of music. She gives the best hugs. She’s a football fan. She has a cool job. She runs. She’s sarcastic. She knits. She loves tennis and… maybe-not-so-coincidentally… has been to the US Open. Her smile when I met her at Soda City before breakfast one weekend is something I’ll never forget.
There are the important, meaningful, adult things. She enjoys what she does. She fostered dogs. She rescued her dog. She’s independent. She owns her own home. She’s involved in her community. She cares about family. She’s health conscious. She’s confident. She’s visited 38 states with plans to get to the remaining 12.
We talked. A lot. We hung out. A lot. We saw free concerts. A lot. Things just clicked, it seemed.
Then we spent an entire Saturday together in Columbia. Then we went to a concert in Charlotte on Sunday. Then Monday, it was done. Over a text. No fighting. No arguing. Just flipping a switch, ripping the band aid off, and going cold turkey on talking. A day before her birthday.
So here we are – two cards in the mail, one phone call attempt, and 54 days later. And nothing. Not a day goes by that something dumb, silly, unrelated, sentimental doesn’t remind me of something I did, said, saw with her. And for someone who struggles with big, quick changes, it’s been difficult. There was a reliable, much welcomed constant in my every day that’s just gone. Maybe for now. Maybe for good.
Like that summer 11 long years ago, there are no hard feelings, no bitterness, no anger. Just confusion, sadness, and an appreciation for being in the right place at the right time. Even if just for a little while. And maybe a little (… maybe a lot…) of hope that one day our paths may cross again.
The Grandmother – As if one seismic shift in my daily life wasn’t enough to handle at once, Mommom – my grandmother on my mom’s side – went back into the hospital from her assisted living facility. Except this time it wasn’t a “Oh, she just temporarily needs better care to get better” trip to the hospital. It was a “Are you comfortable with the last time you’ve seen your grandmother because we’re not sure if she’s making it through the weekend” trip to the hospital.
It was hard. It is still hard.
It caught me completely off guard at work the Friday everything started happening too fast. I couldn’t concentrate. I was comfortable with the idea that I may had made my last visit with my grandmother. But I couldn’t shake the emptiness that was being two hours away from everything going on while everyone else in my immediate family was at the hospital together. By lunch, I had left work and was already on my way to Columbia in what’s been the only trip back since List Item #1 went down.
Fortunately, the seriousness of the hospital stay slowly subsided. She’s back at her assisted living home, albeit in the rehab wing instead of her own room. So for the short term, things have worked out for the better. Unfortunately, the long term outlook is that it’s only a matter of time before there’s another serious bout with another ailment. Between Alzheimer’s, years of prednisone use for arthritis, and the last few trips to the hospital for C. Diff, her overall health and well-being is pretty weak.
The irony of it all? After nearly a lifetime of chain-smoking unfiltered cigarettes, there’s never been any lung issues or cancer concerns. You just never know, man.
The Attitude – Difficult, heavy times tend to bleed into everything else. Attitudes. Perspectives. Outlooks. Life. All of it. And in a surprise to no one, mine has noticeably suffered.
My job has been nothing but good in the 2+ years I’ve worked at my company. The people are enjoyable. The work is satisfying. The benefits are fantastic. Yet I can’t tell you the number of days I haven’t cared about getting up in the morning and making the trek into the office since August. I’m far too prideful to let my work suffer. But I’d also be lying if I said I had any interest in it for much of the last six weeks.
Ever since Boston College joined the ACC, I’ve wanted to take the trip to Boston and Chestnut Hill to tour the city and catch a game. My dad has been gung ho about tagging along too. In 2016, the stress of a breakup, building a new house, and starting a new job all converging at once wrecked that trip at the last minute. Once I found out I missed out on Texas A&M tickets this year, I threw out the idea to my dad to make the trip north in November a week after my birthday. Only to break the news to him a couple of weeks ago that I just don’t have it in me right now. I’ll try to steer clear of the dating world in the Fall of 2020, Daddy.
Football as a whole hasn’t been safe either. I love college football. I wait all year for this time of year. Yet I’ve had to drag myself to the two games in Clemson so far. It’s getting a little better. And I’m on my way to see Trevor Lawrence make his first start as this posts. But the excitement just hasn’t been there.
Even stupid, little, mundane things have suffered. The dogs have been let out back more often instead of walking them around the neighborhood. There’s a wall in my entryway that’s half painted with the ladder still set up in the dining room because I just haven’t cared to finish it. My house has been vacuumed… once? twice?… since August. Since May 19th, I’d been to Columbia six out of twelve weekends but I haven’t wanted a thing to do with it since then. I’ve paid attention to my resolutions less. I’ve eaten less. I’ve slept less. I’ve just cared less. And it bums me out. But I’m actively trying to fix it though.
The Queen City – This last one has caught me by surprise the most. It’s fair to say I’ve enjoyed my time here in Charlotte. I moved here from Raleigh in late June 2012. Outside of my last eight years of grade school growing up, it’s the longest I’ve ever lived in one town. And we’re not too terribly far from surpassing that one. Even with grad school, I was only in Clemson for five and a half years.
Then things just changed.
Seemingly overnight, I wanted out of Charlotte. It just hasn’t felt right. I’ve made more than one mention to friends that if I didn’t have the two pups with me, I may be a couple of weeks into another cross country trip by now. I know some good people here but I don’t have any super close, hang-out-on-the-weekend friends. I’ve lost a lot of interest in the house (which may help explain the half painted wall…).
So where would I go?
Maybe Columbia. Most of the things I enjoy about Charlotte have popped up in Columbia since I last lived there. A solid local food scene. Outdoor recreational options. A healthy 5K community. A minor league baseball team. An animal shelter I’m passionate about. And as someone who never cared much for the city, it’s been a dangerous experiment in spending time with someone who truly enjoys living there. Not to mention I’ve got my brother and two adorable nephews there. Most obvious of all, I LOVE the Riverbanks Zoo.
But maybe not. I’ve never wanted to be right under my family’s thumb. This would put me immediately in their backyard. The music scene is awful compared to Charlotte. The job market is mediocre at best. Unless I could convince my job to let me work from home… but then I’d have to work from home.
So… yeah…
That’s been my life for the last two months. A bundle of fun and a pleasure to be around, I’m sure. I’ve struggled. I’ve coped. I’ve gotten better. Then worse. Then better. I think things have plateaued a bit for the time being, slightly above rock bottom, so there’s been some hope lately.
Fortunately, it’s not all completely for naught.
After pouring out everything going on to my dad for several hours in his driveway after a football game, I caught a (jokingly?) back-handed compliment that about sums it up.
“The worse things get in your life, the better of person you become.”
A couple of years ago when I was going through a rough patch, I had a therapist tell me that she was impressed with how self-aware I was of my shortcomings or areas I need to work on and how hard I focus on self-improvement. I buckle down when things go bad. And I’ve hit it hard this time around.
Reading – I’ve finished three books (to the tune of 1,300 pages). I’m 600 pages into another fiction book I’m reading on my own time. And 100 into a self-help book on happiness I’ve been reading at lunch [Insert “I’m reading ‘Don’t Kill Myself’ books” Wedding Crashers clip here]. Taking notes and everything. It’s where I stumbled over the opening quote.
Diet – The bad news is that my appetite is way down. The good news is that I’m eating way healthier because of it. Breakfast? Orange juice and Special K. Maybe a bagel and some cream cheese. Lunch? I pack a sandwich and take pretzels or a granola bar. Dinner? A salad most nights. Water with almost every meal. I’ve ditched the sides if I can whenever I eat out now. If I’m in the mood for a snack? Yogurt. Because I watched too much Burn Notice years ago.
Volunteering – November is my company’s “giving back” month. So they’re slowly ramping up their volunteer efforts. Last Wednesday, a group of us made dinner for the Hospitality House of Charlotte . We made enough tacos for 40 people. Then 4 showed up, which was a little disappointing. But we got to stock their fridge with SO MUCH leftover tacos! Next week, I’m helping pack Hurricane Florence relief boxes at work.
Running – I’ve been on a pretty consistent 5K schedule. I put in 27 miles in August. That number’s jumped up to 36 miles in September. Had a 5K not been rescheduled from the hurricane, I would have logged two by now with a third one this Sunday. I have at least three scheduled in October. My last one, I was able to get my time under 10 minute miles. I haven’t done that since 2015! I’m averaging 12,000 steps a day on my FitBit.
Working Out – I finally bit the bullet and gave OrangeTheory a shot in late August. I signed up for four classes a month. I went on the 3rd, 9th, 16th, and finished up on the 23rd, just in time to up my membership to eight classes a month. Just went to my first one on the next cycle yesterday after work. I’m even kicking around the idea of giving Hell Week a shot at the end of the month? Hey! Free tshirt! And between the eating, the running, and the working out, I’m down close to 10 pounds since August. That doesn’t count the weight I lost chopping my hair off either.
So here we are.
Giving a girl her space and hopefully she’ll be up for chatting later on down the road. Appreciating the time I’ve spent with my grandmother and the time we still have left. Trying to be happier, healthier, and more positive.
Let’s see what you’ve got, October.
And all the roads we have to walk are winding.
And all the lights that lead us there are blinding.
There are many things that I
would like to say to you but I don’t know how

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