24 Weeks with Tremfya: A Pattern Emerges

Twenty-four weeks ago on Monday, August 21, 2017, I took my first injection of Tremfya (guselkumab) to treat my severe psoriasis. That day I witnessed a solar eclipse as I drove to the dermatology clinic in Sacramento. I recalled the day in grade school (February 26, 1979) when the last total solar eclipse occurred in the Northern Hemisphere. That’s around the time when the first psoriasis lesions emerged on my skin.

Over the course of those almost four decades between total solar eclipses I’ve battled severe psoriasis. Sadly, few treatments helped to effectively relieve the inflammation over those years.

I survived messy and smelly coal tar formulations, phototherapy burns, painful side effects of soriatane/etretinate, liver biopsies with methotrexate, rising blood pressure with cyclosporine, and five biologic mediations with injections. Not to mention the strange diets, supplements (I need write about the snake skin powder), alternative Chinese medications, and other unmentionables I tried to “cure” my psoriasis.

Over the course of those almost four decades between total solar eclipses I’ve battled severe psoriasis. Sadly, few treatments helped relieve the inflammation over those years.

Would Tremfya finally be the treatment to eclipse the nagging psoriasis all over my skin?

High Hopes and Expectations for Tremfya

Going into the clinic for my first injection I felt both excited and nervous. All those hopes and dreams of wanting to find “the one” treatment rested in that syringe full of medical innovation. That’s a lot of pressure and expectation on one treatment.

I knew before long that Tremfya would not be the cure I desired, even though it never promised to be one. By week 6 I began to redefine my expectations:

So, I’m lowering my expectations for Tremfya. I do hope this awesome new medication can beat the lowered expectations.  But if it can’t quite climb to the top of that mountain, I’ll take something less. I’ll take less than clear skin. I’ll accept if it needs something other than cyclosporine, such as phototherapy, or stronger topical treatments, to work more effectively at suppressing psoriasis.

Of course, I still hope it clears my skin in a couple months. But if it doesn’t by week seven or eight, I won’t fret about it not doing its job . . . at least not quite yet.

Going into week 21 I’m not fretting about whether or not Tremfya will work or not. Instead, I’m observing a pattern emerge on how it works with my psoriasis. Continue reading →

6 Weeks with Tremfya: Redefining Expectations

The sunsets here in Northern California’s Central Valley can light up the sky with a myriad of colors. I took this shot while exercising, reminding me how precious moments like these are to not waste–especially as the wait for Tremfya’s ultimate result continues.

When I started taking Tremfya (guselkumab), I carried an unstated goal and expectation: clear skin. I looked at the graphs and incredible data on the effectiveness of Tremfya and just figured I could enjoy life with less and less psoriasis over the course of sixteen weeks.

At six weeks, some forty-two days later, I’m readjusting my expectations.

I know I need to wait another couple of months to see the full effect of Tremfya on my over-active immune system. But so many other factors become involved in how my skin looks than if I take an injection every eight weeks or not. I just hoped that the new injection would strong arm all those other triggers to where they would give up their fight.

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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?

8 Weeks with Tremfya: It’s Working!

10 Weeks with Tremfya: One Step Back

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

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They are not giving up so far. The biggest factor appears to be tapering cyclosporine. I knew that psoriasis and eczema would inevitably rebound as in the past. While I enjoyed some relief from psoriasis after a few weeks on Tremfya, over the last couple weeks all kinds of rashes broke out on my scalp, trunk, legs—almost everywhere. The spots that went away a few weeks ago came back as itchy, red, and irritated sores.

Tremfya might still win out in the end, but the process is not the straight line to spotless skin I imagined or hoped.bNow that I’ve come back down to earth, what are my expectations for Tremfya? How do I define success if it’s not clear skin with no complications?

Lowering Expectations

As a graduate student, I carried high expectations for everything. I thought I only needed to say something once then (most) everyone would agree and understand. I figured that if I learned a lesson that I learned it for life with no relapse. I expected my work at church to be as easy as learning in school.

My mentor pulled me aside to gently tell me to lower my expectations for just about everything.  What?! That sounded so wrong to my idealistic brain. But my mentor passed on wisdom that applied to so many aspects of my life since, including psoriasis.

So, I’m lowering my expectations for Tremfya. I do hope this awesome new medication can beat the lowered expectations.  But if it can’t quite climb to the top of that mountain, I’ll take something less. I’ll take less than clear skin. I’ll accept if it needs something other than cyclosporine, such as phototherapy, or stronger topical treatments, to work more effectively at suppressing psoriasis.

Of course, I still hope it clears my skin in a couple months. But if it doesn’t by week seven or eight, I won’t fret about it not doing its job . . . at least not quite yet.

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Of course, I still hope Tremfya clears my skin in a couple months. But if it doesn’t by week seven or eight, I won’t fret about it not doing its job . . . yet.

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Raising Awareness

In the meantime, week 6 of Tremfya coincided with the second annual TeamNPF Walk in Sacramento. Last year we registered about 50 people and raised just over five thousand dollars. This year we hit 75 people and seven thousand five hundred raised!

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I’m amazed at how little people know about psoriasis, and the resources available to them. My motivation and encouragement comes from every time someone says that they never met others with psoriasis, or how difficult living with psoriasis can be.

My family came out early in the morning on a Saturday to join the walk and volunteer to lead the walk group. Their support and love means the world to me as I pour so much of my life into inspiring, empowering, and advocating for those impacted by psoriasis.

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Verse of the Week: Isaiah 53:4-5

This verse from Isaiah once haunted me. The suffering servant brought healing to wounds. So why aren’t my wounds of psoriasis gone, I wondered. I came to accept that they are healed, but perhaps not in this lifetime or in the way I might expect.  Now the verse is comfort to me as I put my hope in a future redemption of this body–no matter what happens with Tremfya or any other medication.

Surely he took up our pain
    and bore our suffering,
yet we considered him punished by God,
    stricken by him, and afflicted.
But he was pierced for our transgressions,
    he was crushed for our iniquities;
the punishment that brought us peace was on him,
    and by his wounds we are healed.

Easter Hope in a Stormy Time

This week is a busy, busy week for me. Palm Sunday I spoke twice in the morning, and led an intense ninety-minute meeting over lunch with a leadership team of twenty. On Tuesday, my colleague developed a persistent cough. I covered for him to lead the Tuesday evening prayer meeting at church. Somehow the church leaders nominated me to speak on Good Friday. To top it off I’ll speak in one Easter service, and baptize a member of our English congregation at Davis Chinese Christian Church after lunch. Whew.

While it’s a busy week for me, I’ve also looked forward to this week. It’s a special time not just for the church, but also for me.

My psoriasis story connects to my faith in my teenage years. I didn’t grow up with any kind of religion–except the odd mix of occasional ancestor worship and a prayer at a holiday dinner. But my teenage years turned quite tumultuous with conflict in the family, high levels of anxiety and pressure to succeed at school, fear of failure in both social situations and academically, and racial discrimination. I became depressed and borderline suicidal during my high school years.

Psoriasis obviously didn’t help lift my mood. I experienced severe psoriasis without much by way of treatment. I didn’t start taking any systemic medications, like methotrexate, until I attended university. Back then I used tar, topical steroids, and a wooden light box constructed by my dad and me. Phototherapy in a cold garage mid-winter isn’t pleasant. At least it warmed me up some. But it didn’t help suppress the psoriasis as much.

My dad became depressed during the Reagan economic recession, worrying about losing his job. His six-month disability added immense pressure on the family. He didn’t break out of his depression until he started going to church. Family members followed him one by one. I finally relented, the last one in the family, accompanying him one Sunday to a small Chinese non-deonimational church. Turned out the youth didn’t like me much as I engaged in a wrestling match during a pick-up football game after the Bible lesson.

But the emptiness in my heart persisted despite the rude welcome by my peers. I knew I needed to hold on to something that wouldn’t let me down or suddenly change. On an Easter Sunday in the mid-80s I responded to a call to go forward at the end of the church worship service to learn more about Christian faith. My life really changed after that.

I look back at that time over thirty years ago as an anchor for my soul. Times are busy as a minister on a team overseeing a church of almost four hundred. As I write this I have a Word document open with the Easter message in progress, a shower cap on my head while I apply a low strength steroid on my scalp for four hours, and a daughter with bipolar disorder who continues to recover from a nasty episode. With the pressure I feel from work and at home, and the ever-pressing need to keep up psoriasis treatments and advocacy/writing, I need that anchor every day.

It’s also a crazy time in our world. I watched the press conference with the Secretary of State in Russia talking about Syria. San Bernardino, not too far from where I used to live in the Los Angeles area, was hit again with tragedy. North Korea is in the news again. It’s a stormy time.

Easter hope started when I was a teenager in a stormy time. It’s windy outside now. I didn’t see this spring storm coming. My life feels like a ship in the sea–storms coming and going, I bob up and down, but with a strong anchor I hold on to that hope for when the sun will shine again.

Hebrews 6:19-20: We have this hope as an anchor for the soul, firm and secure. It enters the inner sanctuary behind the curtain, 20 where our forerunner, Jesus, has entered on our behalf.