42 Weeks with Tremfya: Coping with a Skin Flare

Beautiful flowers in Sitka, Alaska, taken during a stop on our summer Alaska cruise vacation with family.

A couple weeks ago marked the 42nd week on Tremfya (guselkumab) and the 7th injection. I started in mid-August last year with about ten months elapsed since that first injection on the day of solar eclipse in August.

At this point in my treatment cycle I hoped to have more stability with my skin. But skin flares do happen even while taking the best medications.

What a Bad Skin Flare

Somehow I think that if I’m taking a super expensive biologic for psoriasis that I’m entitled to clear skin. Expectations often wreak havoc on my mood when I think this way. As an optimist and idealist it’s quite easy to bring those unrealistic expectations to the new medications I take.

When my skin flared like a wind swept wildfire a month ago I felt overwhelmed. Between the darker red spreading psoriasis spots and the generalized bumpy rash all over my body I could only feel normal skin in a few places. My mood darkened as I went into coping mode.

When my skin flared like a wind swept wildfire a month ago I felt overwhelmed.

A few factors appeared to contribute to the flare: increasing phototherapy dosage too quickly; Tremfya losing effectiveness at the end of the 8 week cycle; completely stopping cyclosporine; stress at work with a demanding spring; and a busy schedule with end of school year activities for the kids.


Follow my Tremfya journey!

Tremfya (Guselkumab) Week One  

3 Weeks with Tremfya: The Waiting Game

8 Weeks with Tremfya: It’s Working!

12 Weeks with Tremfya: The Third Injection

16 Weeks with Tremfya: The Verdict?

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

24 Weeks with Tremfya: A Pattern Emerges

28 Weeks with Tremfya: Still Working? (Injection #5)

38 Weeks with Tremfya: The Q&A Edition


Employing Poor Coping Strategies

I’m not proud to report that during the flare I didn’t cope well at all. I did continue my skin care routines including taking a break from phototherapy and using steroids with wet wraps a couple times. But my expanding gut tells me that I ate way too much junk food. All those pastries, ice cream, donuts, extra shots of espresso, greasy burgers, and chips of all sorts no doubt made my skin even worse.

I also tend to stay up later when my skin flares. In an ineffective attempt at avoiding caring for my skin I delay my shower and night time skin routines. Instead I play games on my cell phone, (binge) watch Netflix shows, work on emails, or read online sports news. Eventually I get going on what I need to do, but much later than I’d like. The next day I’m naturally tired and wanting naps in the afternoon.

I really could use more margin in my life for when difficulties like skin flares inevitably come. It’s not that I don’t know better ways to cope when my health tanks. But if I’m already tired and stressed I don’t have the will nor the energy to counter those cravings to eat junk food and stay up late.

I really could use more margin in my life for when difficulties like skin flares inevitably come.

Thankfully, vacation came at a great time. A week on an Alaska cruise settled my mind, gave me much needed time away from work, and allowed the new Tremfya injection to start working.

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Waterfall next to Mendenhall Glacier in Juneau, Alaska

Treatment: A Work in Progress

I hear stories of how long it takes to finally find a treatment plan that effectively manages psoriasis while minimizes risk. Some people go through multiple treatments, including combinations of various medications such as topical, phototherapy, systemic pills, and injectable biologics.

I feel like I’ve been trying to find that elusive treatment plan for the past twelve years. When the systemic Soriatane with phototherapy stopped working for me in the mid-2000s my skin would not stop peeling and scaling. Pure misery. I tried new biologics, went back to methotrexate, and even tried coal tar. Nothing worked.

Cyclosporine turned out to be the most effective medication for my psoriasis and eczema. However, it is only FDA approved for psoriasis for one year because of it’s toxicity to the kidney and other side effects. I used cyclosporine off and on for the next decade while trying each new biologic, although the breaks would only last a couple months before I needed to start up again.

Psoriasis treatment just feels like a work in progress, especially when that bad flare comes along unexpectedly.

Now I’ve finally stopped cyclosporine while taking Tremfya and experimenting with phototherapy. Psoriasis treatment just feels like a work in progress, especially when that bad flare comes along unexpectedly.

Time to end this entry with a photo of a cool glacier in Alaska to remember those calmer days. Too bad I can’t just go back here whenever my skin flares!

Margerite Glacier

Glacier Bay National Park, Alaska

My Surprise Visit to Wrigley Field

The day after I turned sixteen years old I took my driver’s license exam. That summer I utilized my license to deliver office supplies around the Bay Area and drive to Southern California with my friend. The highlight of our SoCal trip included taking in baseball games at Jack Murphy Stadium (San Diego) to watch the Padres, Dodger Stadium (Los Angeles) to see the Dodgers, and Anaheim Stadium (Orange County) to watch the Angels.

That’s when my goal of visiting every MLB baseball stadium in American began.

Baseball holds a special place in my heart. Playing Little League baseball as a nine-year old introduced me to American culture. I grew up in an immigrant Chinese family and faced discrimination in those early days. But baseball served as an outlet for an energetic young boy facing uphill challenges with psoriasis and bullying.

Read about My Painful Memories of Living with Psoriasis as a Teenager on my column The Itch to Beat Psoriasis at Everyday Health

My hard-working dad took me to San Francisco Giants games when I earned free tickets for good grades. The Giants gave away tickets to evening games at the frigid and windy Candlestick Park. Still, I loved going to those games watching Jack Clark, Darrell Evans, and Greg Minton out on the diamond.

As a kid I only dreamed of ever seeing a game at places like Fenway Park or Wrigley Field.

Landing in Chicago for HealtheVoices

In late April my daughter Lydia and I flew into Chicago for the HealtheVoices conference–a gathering of over 120 online patient advocates from some forty different disease states. Lydia mainly wanted to see a friend and visit Chicago sites. Since I had more time the first two days we set aside time to see the town together before I became busy with conference meetings.

The first day we went to Millennium Park and Navy Pier. Day two, after my meeting ended in the mid-afternoon, we headed out for an early Chicago deep dish pizza dinner. The walk from the hotel took a bit longer than expected. We needed the exercise so I didn’t mind. By evening, though, the cold wind whipped up reminding me Chicago’s moniker is “The Windy City.”

Riding the “L” After Dinner

I couldn’t help but think about the television show ER, set in Chicago, where the doctors would take the “L” subway system after their shift ended. I wanted to ride the “L” just once to honor that memory. A ride back to hotel turned out to be the perfect excuse to find the nearest station.

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Once seated on the train I figured out our stop for the hotel would only take a few minutes. On the subway map I noticed the Addison Street station stop a bit farther north than the stop for the hotel. I also somehow remembered that the Chicago Cubs play at Wrigley Field on Addison Street. A quick Google search confirmed we could see the baseball stadium if we took the “L” a few more stops.

Later we learned that the neighborhood around Wrigley Field isn’t necessarily the safest. Unknowing tourists traveling on a whim sometimes don’t know any better. Besides, with wanting to see the San Jose Sharks playoff game against the Las Vegas Golden Knights later that evening, we’d only have enough time to take a quick picture.

To my surprise the stadium lights lit up the night sky. People milled around the stadium and storefronts welcomed customers. All signs pointed to Wrigley Field playing host to a Cubs home game.

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Buying Tickets from a Reseller (Okay, Scalper)

We ran around the stadium to find the front entrance where I could take a quick picture. The tied game against the Milwaukee Brewers had entered the bottom of the fifth inning. As soon as Lydia took this photograph of me the ticket resellers (scalpers) descended on us like vultures spotting prey.

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The first offered me a bargain basement $25 a ticket for, of course, the best seats in the house. I politely said no then walked away. The second wanted to sell me lower deck seats for $10 each. I said no and walked even further away. He followed me for about twenty yards. After a short whisper deliberation with Lydia, I told him I would buy the tickets only if he walked to the entrance gate with me to confirm their legitimicy.

A few minutes later Lydia and I entered into Wrigley Field for the first time. The tickets gave us a great view along the left field line with some obstructed view only above us.

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A few minutes later Lydia and I entered into Wrigley Field for the first time. The tickets gave us a great view along the left field line with some obstructed view only above us.

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Singing “Take Me Out to the Ballgame” at Wrigley Field

Any baseball fan knows how iconic singing “Take Me Out to the Ballgame” during the seventh-inning stretch is at Wrigley Field, especially with legendary Harry Caray. A great MLB article Famous fans stretch their pipes at Wrigley describes this Cubs tradition. I waited expectantly for the top of the seventh to finish then signaled to Lydia it’s time to sing.

Here’s a video of that memorable moment:

 

Immediately after the song ended we ran for the exits wanting to avoid the rush out of the stadium. On the way out we stopped at the gift shop, took a quick pit stop, and snapped a few more photos.

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The Cubs ended up winning 1-0, with the winning solo home run by Kyle Schwarber hit in the bottom of the sixth inning.

You never really know what adventures life might take you on when you get invited to a conference because you’ve blogged about psoriasis for over ten years. Or you decide to take the train instead of walk after dinner. Or what might happen if you stay on that train for a few stops longer to see a baseball stadium.

On that late April evening in Chicago I crossed another item off my bucket list: taking in a baseball game at Chicago’s Wrigley Field. All made possible because we felt adventurous after eating deep dish pizza.