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:
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!
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.
PsoHoward 