16 Weeks with Tremfya: The Verdict?

August 9, 2017 Huntington Beach, CA. I took this photo just before starting Tremfya in August in one of my favorite spots in the world.

I started my Tremfya (guselkumab) journey on Monday, August 21, 2017. Sixteen weeks is an important point to evaluate as clinical trials use this time to evaluate new medications. On December 11, after three injections (week 0, 4, 12), I reached that interim endpoint.

The clinical trial data shows that more than 90% of patients showed greater or equal to 75% improvement at 16 weeks. When I took that first injection, I hoped my body would assimilate Tremfya safely, while effectively shutting down the psoriasis inflammation all over my skin.

Below I evaluate my experience with Tremfya at 16 weeks. The following “verdicts” reflect a moment in time, and certainly are not final. As a disclaimer, my observations are from my personal experience only, and should not be construed as making any claims or predictions for anyone else who might try Tremfya.

How well is Tremfya working for me?

Quite well! After a roller coaster few months with tapering off of cyclosporine, atopic dermatitis (eczema) flares, and super stressful stretches of work, I’m amazed at the level of psoriasis clearance. I’m still on a small, small dose of cyclosporine, but no other biologic gave me this much skin clearance working together with even higher doses of cyclosporine.

After a roller coaster few months, I’m amazed at the level of psoriasis clearance with Tremfya.

I have yet to see my dermatologist this month (that is another story altogether trying to get an appointment with him), so I can’t say what percentage improvement I’ve experienced. But my guess is at least the 75% clearance, and probably more.

I promised photos in my last update. The following photos from July, October, and and December don’t lie.

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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

42 Weeks with Tremfya: Coping with a Skin Flare

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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.