psoriasis, Psoriasis Treatments

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.

 

 

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psoriasis

10 Weeks with Tremfya: One Step Back

Two steps forward, and one step back. This saying aptly describes how I feel about my experience with Tremfya (guselkumab) after ten weeks. Overall I see progress. But during these seventy days I can point to a few setbacks.

When I updated two weeks ago I felt great—positive that Tremfya could take on my psoriasis single-handedly. I continued tapering cyclosporine to three 100mg pills a week (instead of my typical three pills per day). Even the atopic dermatitis stayed mostly under control.

But over the past week the psoriasis took a clear step backwards. When I looked at my skin in a full length mirror I could see an archipelago of bumps that recently emerged. When I put lotion on I could feel the hot spots breaking out on my back, legs, and arms.

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Over the past week the psoriasis took a clear step backwards. When I looked at my skin in a full length mirror I could see an archipelago of bumps that recently emerged.

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I felt similar setbacks in the first few weeks, but now it’s later in the treatment cycle. Ten weeks is not the endpoint to improvement with Tremfya, though I didn’t expect to take one step back at this point.

One Part of the Solution

As those lesions grew in both size and number, I became more and more depressed. Setbacks never feel good. I hate hearing how the downward trend is only a pause in a glorious future. As a person who has experienced severe flares, I dwell on the down trajectory becoming an unstoppable spiral downward.

What broke me out of this negative thought cycle? Accepting that Tremfya might only be part of the solution, not a single solution. Monotherapy is a dream I stubbornly hold onto—taking one medication that suppresses psoriasis by itself. No more phototherapy. No more pills, ointments, or steroids. One injection every eight weeks, and that’s it. The recent outbreak also broke me out this line of thinking.

Tremfya can hit clean-up or be the starting pitcher, to use a baseball analogy. But one medication, however strong or targeted, probably will not adequately do all the work. Teamwork means combination therapy—using multiple approaches, and even lifestyle changes, to face down the enemy.

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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!

12 Weeks with Tremfya: The Third Injection

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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Final Dermatology Appointment

This coming Friday is my last with Dr. Maverakis at U.C. Davis Health, Dermatology. My insurance provider approved a single visit referral for the remainder of 2017. Since my next appointment falls on the first week on November, that one will be my last.

I will miss the collaboration and rapport built up with Dr. Maverakis. With more time I would want to continue experimenting with the right combination to treat psoriasis and atopic dermatitis. The ideas we generate at appointments come to fruition weeks or months later. This time, however, marks the end. No more tomorrows to return to see if we should continue a therapy, start a new one, or add one to the arsenal.

It took several months accept this change. The blow will soften if the new dermatologist works with me well. Otherwise I would consider more radical changes such as switching health insurance companies through a change in job status, or entering the Marketplace. No good options there, I’m afraid, but health comes first.

Verse of the Week

Finding Joy in Suffering (James 1:2-4)

One of the most impactful passages on how I view living with severe psoriasis comes from James. This passage came to me during a six-week stint at a psoriasis treatment center in Palo Alto, CA the summer after I graduated from high school.

Almost thirty years later I see the wisdom in allowing life’s circumstances, even the unpleasant ones, to positively influence my heart and character. Nothing’s wasted, I like to say.

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.Let perseverance finish its work so that you may be mature and complete, not lacking anything.

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psoriasis, Psoriasis Treatments

8 Weeks with Tremfya: It’s Working!

The high temperatures are still in the 80s here in the Sacramento area, and I can wear shorts! My lower legs began clearing from psoriasis a few weeks after starting Tremfya.

On Monday I hit the eight-week mark on Tremfya (guselkumab), Janssen’s new biologic indicated for plaque psoriasis. Over the weekend, it felt like the remaining psoriasis started melting away as lesions flattened, looked less red, and even disappeared. Some psoriasis persists, primarily on those stubborn spots on my trunk/back. But, hey, I’m not complaining.

I’m excited about the response, but remain cautiously optimistic. I thought with this kind of response I might be jumping up and down. But Lori and I agreed that we’d like to see continued progress as we’ve had our hopes dashed so many times in the past.

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I’m excited about the response, but remain cautiously optimistic. I thought with this kind of response I might be jumping up and down.

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Maybe I’m in shock that I can’t bring myself to believe a medication might effectively treat my psoriasis apart from cyclosporine. The journey with Tremfya is only the most recent leg in a lifelong journey to find that magic bullet of a treatment to relieve me of psoriasis lesions.

Continue reading

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Local News, Personal Faith

Call to Prayer: Northern California Wildfires

The smoke outside the church office built up to alarming levels over just a couple hours. The winds shifted, bringing darkened skies that blocked all but the sun’s outline like an impending storm.

The Northern California wildfires made their presence known in our neighborhood earlier this week as fine ash blanketed the city. I ran to my car, amazed a few minutes later how my asthma flared so quickly.

As of tonight, the fires have taken forty lives and thousands of structures. It does look like progress is being made in containing these fires, but as with the recent hurricanes, the impacts will reverberate for a long time.

Local Wildfire Impact

The winds picked up on Sunday night a week ago. Like last night, they howl through my neighborhood as if through a wind tunnel. The air cools at night, but it is dry. Fire danger warnings remind me this is fire season. The warnings last until at least tomorrow evening even as winds died down this afternoon.

I live about thirty miles from the nearest fires in Northern California. Even though the fires do not threaten my home, we see their impact of health and activity everyday. My son could not run cross country for a few days.One student I talked to didn’t know if he would return to school after a week off due to smoke and fire.

On Thursday, when the air cleared out some, I took him to a local meet in Sacramento. A coach from Lodi mentioned his friends in the wine country who lost a home, and others who evacuated. Tonight I learned that someone at church knew someone who lost a house in Santa Rosa. Everyone knows someone touched by these fires it seems.

From Pain to Prayer

I woke up Monday morning to news of all the fires in the wine country. Fires in the Sierra Nevada foothills and in Southern California also flared. Lori immediately thought of the Tonner Canyone Fire that nearly swept into our neighborhood in 2010. In California it seems we’re never too far from fire’s impact.

Growing up in the Bay Area and going to univeristy near Sacramento at UC Davis, I have a fondness and love for Northern California. My family decided to move back after eight years in Los Angeles partly to return to what I felt like home. It’s painful to see so many of my neighbors impacted by these fires.

As I prepare for Sunday at church tomorrow, I keep coming back to the need to turn this pain I feel to prayer for those impacted by the wildfires. I also want to send out a call to pray.  I think of those who lost their loved ones, homes, businesses, and sense of security. Some eight thousand fire fighters fight on the front lines of the fires, as do many, many others of responders.

Psalm 46 is a psalm I’m praying for Northern California. May God be the refuge and strength of all those who are fearful, anxious, or experiencing loss.

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Psalm 46:1-3

God is our refuge and strength,
    an ever-present help in trouble.
Therefore we will not fear, though the earth give way
    and the mountains fall into the heart of the sea,
though its waters roar and foam
    and the mountains quake with their surging.

 

 

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