Monthly Archives: October 2017

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.
2 Therefore we will not fear, though the earth give way
    and the mountains fall into the heart of the sea,
3 though its waters roar and foam
    and the mountains quake with their surging.

 

 

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psoriasis, Psoriasis Treatments

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

42 Weeks with Tremfya: Coping with a Skin Flare

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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.
5 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.

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