psoriasis

My Surefire Skin Trigger

The last few weeks I’ve lived with one enduring fear: catching a cold or flu from all the sickness around me. The flu has hit my area hard, including my church and workplace, to the point I didn’t even want to leave my house.

I try to avoid getting ill mainly for one reason–it’s a surefire trigger for my skin conditions.

A Lifelong Skin Trigger

My very first major break-out of guttate psoriasis came on the heels of a strep throat infection I sustained as an eight year-old. My body became quickly covered with those drop-like red sores characteristic of guttate. I remember lying on the ground of the living room, overheated, crying as the fever and skin sores overran my body.

The last few weeks I’ve lived with one enduring fear: catching a cold or flu from all the sickness around me.

The infections came more often when I started immune suppression therapies such as cyclosporine and biologics. I know it’s difficult to say that a certain medication caused me to contract certain infections, but that’s an observation from my experience.

Bacterial infections such as strep throats, ear infections, and staph on the skin all flared my psoriasis and eczema. Viral infections, such as flus and colds, did the same.  About four years ago I contracted Influenza A. The respiratory viral panel confirmed I had an H3N2 virus. I can’t remember ever feeling so poorly with a viral infection. Tamiflu didn’t help much either. And boy did my skin break out with vengeance. It took weeks to calm that flare.

Whenever a fever hits with an infection I know my skin wil break out not too long after.

This time around seemed milder than others, though. The fever stayed low-grade for about twenty-four hours. Sure enough my skin broke out. I took a photo of my stomach to show how this characteristic guttate-like psoriasis looks when I get it.

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January 20, 2018. Psoriasis broken out on my stomach after a viral infection with a mild fever.

Sadly, I fear my skin will worsen yet as I took the photo just a day after the fever broke. Calming the flares from these infections can take a couple weeks or more depending on what other factors might be involved.

Living with Skin Triggers

Of course, the moral of the story is to avoid psoriasis and eczema triggers at all costs. But sometimes they can’t be avoided, especially during one of the worst cold and flu seasons we’ve had in many years. I washed my hands, tried not to touch my eyes or nose, and avoided touching certain surfaces such as doorknobs in public. Still I contracted a virus.

Of course, the moral of the story is to avoid psoriasis and eczema triggers at all costs. But sometimes they can’t be avoided.

Living with skin triggers is a fact of life, unfortunately.

I know, however, that this flare won’t last forever. Once the trigger is removed my skin will eventually start to improve. That fact does give me a measure of comfort. I do wish, though, I had that home phototherapy unit, or stronger natural sunlight, to help calm this flare. A wet-wrap with topical steroids could help also. I don’t want to do the wet wrap quite yet as it cools my body for a few hours. I’m still recovering from my viral infection.

I would love to hear from you! Do infections trigger your skin conditions? What do you do to lessen their impact?

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psoriasis

20 Weeks with Tremfya: Read the Instructions! (4th Injection)

On Sunday evening I took the fourth Tremfya (guselkumab) injection out of the refrigerator. As I carefully opened the box the instructions fell out onto the desk. I thought, hey, I know how to inject a syringe subcutaneously, so I don’t need to look at it. But a seed of doubt entered my mind: have I really injected Tremfya correctly?

That question became more urgent as I looked over at the specialty pharmacy receipt. Thank God that my health insurance company pays for this expensive biologic. The receipt shows the cost of one injection at $9,500.65. I joked with my daugher I could just about pay her three-year car lease with one injection. I could pay for a lot of stuff.

I could not afford, though, to mess up this injection.

The First 30 Minutes

What I first noticed about the instructions is how to pronounce “Tremfya.” Next, I wish the cover told me how to say “guselkumab,” but I suppose that is for another day.

Tremfya Instructions Cover

The instructions unfolded in accordian style across my keyboard on my desk. I naturally jumped straight to the first step: “Prepare for your injection.” Basically this step says to take the Tremfya box out of the fridge and let it sit on a flat surface at room temperature for at least 30 minutes.

This is a step I should not be able to mess up. But when I took my first dose the nurse did not let it warm up for as long as instructed. I guess her impatience got the best of her. Or, she didn’t read the instructions. I’m glad I started to, and encourage anyone taking a new mediction to do the same.

Time to Inject Already?

Thirty minutes is plenty of time to scan the rest of the instructions and watch a bit of Netflix. Still, that half hour passed too quickly as I hate injections. Self-injections take that hate to another level. Self-injecting with a syringe, not the hit-a-button pen, takes a bit of skill on top of courage.

I hate injections. Self-injections take that hate to another level. Self-injecting with a syringe, not the hit-a-button pen, takes a bit of skill on top of courage.

After stalling for a few more minutes, I picked my injection site and cleaned it with an alcohol wipe. Then I pinched up a bit of tummy flab. In a “dart-like motion,” I finally inserted the needle at a 45 degree angle into my skin. The needle went in quickly and smoothly, although when it pulled out (it does so automatically when all the liquid is pushed in) a bit of blood welled up on the inject site. Applied pressure with a clean cotton ball stopped that nonsense.

After Injection Reaction

As with the other three injections, I felt a bit light headed after the injection. This time the injection site felt a bit itchy as well. I’ve noticed how my asthma perks up slightly with this medication. So, I took a precautionary puff of rescue inhaler beforehand like I do before exercising. I welcomed the fatigue I feel after the injection as I needed to sleep after a huge day at church.

My other reaction was emotional. Continue reading

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psoriasis

Psoriasis and Living Courageously: Reflections for a New Year

Happy New Year! A new year brings a lot of excitement, possiblities, and trepidations. With anything worth fighting for in life, facing down fears and anxieties takes a measure of courage.

For example, this past spring Lori and I visited the California State Capitol in Sacramento to lobby with the National Psoriasis Foundation for a continuation of care bill. Every time I go to the Capitol building I feel quite anxious. But I’m glad I didn’t let that opportunity pass because of my fears.

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April 2017. At the California State Capitol Building with Lori in front of the Governor’s Office.

I’ll need that same courage in the coming months as changes are coming for me in 2018. I will see a new dermatologist. I plan to start phototherapy again. I’m trying to figure a way to work at church a bit less, and write more. The kids have big transitions coming too with the oldest moving on to university, the middle son graduating from high school, and the youngest moving on to senior year and college applications.

I’ll need that same courage in the coming months as changes are coming for me in 2018. I will see a new dermatologist. I plan to start phototherapy again.

I wrote this blog for Everyday Health about how psoriasis taught me to live courageously. I hope it’s an encouragement to you to face your next life challenge or obstacle with a strength of heart.


Living with a chronic illness like psoriasis takes courage. I learned that lesson as a child with psoriasis. The world is a big place for a 9-year-old. That’s when I started using phototherapy to treat psoriasis.

The closest phototherapy light box at the time happened to be about 30 minutes away at the medical center in Oakland, California. My mom, who didn’t drive on the freeway at the time, overcame her fears to take me to light treatments three times a week.

I didn’t really understand what was happening to me. They told me I needed “light treatment,” but that didn’t mean much to me as a kid. My mom dropped me off at the clinic, then headed out to get me a snack.

A nurse escorted me down a long hall through a warehouse area to the box in the back. I took off most of my clothes and put on strange green goggles. Once the nurse turned on the light, I waited until it clicked off.

Continue reading

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Living with Psoriasis, psoriasis

My Last Dermatology Visit: As Good as It Gets?

I couldn’t believe what I read in a letter dated November 21 from Western Health Advantage (WHA), my health insurance provided. They approved my continuation of care request for one more visit in December.

I’d already said goodbye to Dr. M and his team at the November appointment. With excitement, I called the Dermatology department to book my last dermatology visit at UC Davis Health. “I’m sorry Mr. Chang,” she flatly said, “Dr. Maverakis does not have any open appointments for the rest of the year.”

Getting that Elusive Last Appointment

What? After waiting weeks to hear back from WHA I now faced denial at the dermatology office? “You can call back as many times as you want to check for cancelled appointments,” the receptionist told me. They don’t keep a waiting list, but would be fine if I called ad infinitum.

So, I called back a few days later. No appointments still. Another call revealed that the university holidays on the last two weeks of the month hurt my chances of landing that coveted appointment. Then I called WHA about extending the continuation of care. Let’s just say that 45-minute phone call made me want to call back UC Davis to get an appointment in December.

Finally, the receptionist took pity on me. He said he would write my name and number down and give me any cancellations that arose. Sure enough, within a few hours, I booked a 9:15 a.m. on Friday morning, December 15th. Why couldn’t he do that from the start? Anyhow, I felt grateful to have the appointment no matter how I got it.

With this health care system, I’m guessing this is as good as it gets.

Assessing my Skin Concerns

Dr. M understandably wants me to taper completely off of cyclosporine. Tremfya (guselkumabis the key treatment we looked to replace it. This visit happened to coincide with my 17th week on the new biologic.

Check out the new Treatments Tried section with a list of Tremfya blogs.

How would he assess my psoriasis and eczema after using it for four months?

Continue reading

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