12 Weeks with Tremfya: The Third Injection

I took my third dose of Tremfya on late Sunday night. Each box contains one dose.

The last two weeks I waited impatiently for this past Monday. I recently shared how my psoriasis began breaking out before week ten with Tremfya (guselkumab). My dermatologist warned me that sometime before the next injection I might experience a flare as the medicine worked itself out of my body.

Tapering cyclosporine down to a small dose three times a week further increased the odds I would flare. When Monday came I hoped the Tremfya (guselkumab) injection would reverse the reignited psoriasis inflammation. But first I would enjoy, and endure, a long weekend of exciting work.

A Busy Weekend Ends with a Tremfya Injection

This past weekend’s stressful events no doubt contributed to worsening skin conditions. On Friday, Lori and I drove out to Sacramento in the afternoon for a wedding rehearsal. As the officiating minister, I arrived at the church early to get organized. Unfortunately, the bride encountered traffic delays. I can start a wedding rehearsal with almost anyone missing, except the bride or groom. The rehearsal finally started about an hour late.

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Tapering cyclosporine down to a small dose three times a week further increased the odds I would flare. When Monday came I hoped the Tremfya (guselkumab) injection would reverse the reignited inflammation.

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Lori and I did enjoy a wonderful Chinese style banquet dinner after rehearsal, although the later ending to the evening left me exhausted.

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The bride’s father gives away his daughter to an eagerly awaiting groom. The Saturday wedding ceremony in a Sacramento area church became the centerpiece of an exciting, but long, weekend.

On Saturday, I officiated the almost one-hour ceremony. My ceremonies tend to run shorter, but Chinese translation added about twenty minutes to the overall lenght. The longer ceremony added to the stress of the day. An evening reception fourty-five minutes  away left us far from home. That night I worked on the Sunday message until two in the morning.

On about four plus hours of sleep I stumbled onto the stage at church to speak. At first, I could not form sentences properly. Thankfully, my coffee kicked in so I could work through my points. Later in the morning I baptized two students in our new sanctuary baptistery.

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Baptism at Davis Chinese Christian Church. I baptized two students on Sunday in the late morning service after speaking in the early morning service.

 

After a lunch meeting I looked forward to a long nap and evening watching sports. Unfortunately, one of our youth at church landed in the hospital. Lori and I drove back out to Sacramento to visit.

Around midnight I decided to inject the third dose of Tremfya. With the first two injections I felt some dizziness and fatigue, so I decided to take it before bed this time. I let it warm up for about 15 minutes then stared at it for a few more. Something that costs upwards of ten thousand dollars needs to be treated with care and appreciation.

The injection went in quickly and painlessly. I did feel that a bit of dizziness as expected, but slept it off.

[As a reminder, the first dose of Tremfya is on week 0, with a loading dose following on week 4. The next dose is on week 12, with subsequent doses injected every eight weeks.]

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Follow my Tremfya journey!

Tremfya (Guselkumab) Week One

3 Weeks with Tremfya: The Waiting Game

5 Weeks with Tremfya: Biggest Fear?

6 Weeks with Tremfya: Redefining Expectations

8 Weeks with Tremfya: It’s Working!

10 Weeks with Tremfya: One Step Back

14 Weeks with Tremfya: What’s Next?

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 Question/Answer Edition

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Saying Goodbye to My Dermatologist

The Friday before I said goodbye to my dermatologist.

My new provider network approved this last clinic visit to U.C. Davis Health before the calendar turned over to 2018. I first enjoyed the visit with the dermatology resident, Kevin. I was impressed he remembered me from a local National Psoriasis Foundation event. I appreciated how he refilled ALL my prescriptions and gave me the maximum number of refills for good measure.

When Dr. Maverakis finally came in I perked up. Our collaboration grew over the past four years to where we could catch-up, discuss my advocacy and his research, and jump right into my treatments during a typical clinic visit. We talked as if I would see him again. When I reminded him it would be my last visit he said, “I know.”

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I sadly shook Dr. Maverakis’s hand, knowing that I would no doubt talk to him again, but just not at the dermatology clinic.

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We decided that I would continue taking one pill of cyclosporine three times a week. If my psoriasis improved enough after the third Tremfya injection I could stop. If not, I could take that pulse dose of cyclosporine for a couple weeks. Other options to add to Tremfya in combination therapy included phototherapy or wet wrapping periodically.

I sadly shook Dr. Maverakis’s hand, knowing that I would no doubt talk to him again, but just not at dermatology clinic.

Verse of the Week

Romans 5:3-5 The Outcome of Suffering

When I spent six weeks at the psoriasis daycare clinic the summer after high school graduation, many verses helped me endure. This passage from Romans became a seminal passage for my understanding how God could allow me to have severe psoriasis.

Over the years the Apostle Paul’s thoughts rang truer and truer as I sensed God desiring to build up my character and strength through challenges such as psoriasis. Clinging to a secure hope helped me through those lowest of valleys.

Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

 

 

Great Easter Week—My Skin Not So Much

As I look back on Easter week, starting with Palm Sunday, I’m amazed at how much happened. In the span of two Sundays I spoke five times: twice on Palm Sunday, once on Tuesday, Good Friday, and Easter Sunday. I led a few meetings, including a leadership gathering with about twenty attending.

The Good Friday service had around 250 in attendance as I worked together with a Mandarin translator for the thirty-minute talk. To top off the week I baptized a college student whom Lori and I worked with over the last couple months.

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Speaking on Good Friday at Davis Chinese Christian Church with Shirley, my Mandarin translator. Around 250 attended our service this year.

Easter week overall turned out great. True, Lori and I struggled through some roller coaster discussions about issues we face. But by the end of the week we felt much better about most of the concerns.

Unfortunately, though, my skin did not do so well. I’ve enjoyed relatively stable skin. I don’t mind it getting a little worse, then a little better, if I don’t feel the lesions getting too inflexible, large, inflamed, or itchy. But by the end of the week they did all the above—along with a few new friends who popped onto my skin to join them.

Stress (EH blog) is no doubt the key culprit. Here are some ongoing stressful aspects of my life I feel are contributing to my skin flaring:

Upcoming Conference: Besides Easter week responsibilities, I prepared to head out to the HealtheVoices conference in Chicago. The first day I’ll meet with members of “I Know Pso” group sponsored by Janssen Pharmaceutical. The organizers invited me to share about my experience at the American Academy of Dermatology after breakfast. And I thought I had a break from speaking!

Flying: Travel itself stresses me. I’m trying to analyze why I feel anxious on airplanes. I fly quite a bit, but each time I feel my shoulders tighten up, my breath become shallow, and my heart beats just a bit faster than usual. I don’t sleep well the night before either. My wife thinks it’s the anticipation of the trip, which I agree with. But it’s possibly the fear of dying on the plane too—however irrational that might be.

Leaving Family: I don’t like leaving my family either. Lydia continues to recover from her bipolar episode in January. Lori needs to do double duty on driving kids to school, cooking, and housework. I wonder if all the little things I do around the house, like checking doors and lights, will get done. I miss my bed and pets when I travel.

Social Anxiety: Even though I work with the public and people all week, I do a get a bit of social anxiety going to these conferences. It’s another world to me—the world of patient advocacy and healthcare. I need to shift gears quickly to engage a different group on a different level.

Lack of Rest: At this point I’d rather take a day or two to rest rather than dive into a five-day trip. To take these trips for patient/psoriasis advocacy, I usually need to take vacation days from work. To minimize disruption to my work, I work on my day off and on the trip. Sometimes I don’t get a day off for a couple weeks. With a heavy workload and travel, I easily start feeling frazzled.

None of the above is great for my skin and health, but I hope it’s a temporary effect. I hope to keep up my exercise routines at the conference, and keep up with good eating and sleeping habits. I won’t miss a Sharks playoff game either! The time difference allows me to watch in the evening after dinners are finished.