A lot can happen in a couple of years. I’ve changed jobs, become an empty nester, and adjusted to (more forced into) pandemic life. But all through the past twenty-four months one thing has remained the same: Skyrizi.
I started taking Skyrizi to treat my psoriasis on May 31, 2019. With two years under my belt, I wanted to update how I’m doing and my experience with Skyrizi through a Q/A format.
Skyrizi is normally dosed at every twelve weeks with two syringes making up one dose. When I began I took a dose at week 0 and then at week 4. These two doses are considered a starter, or loading, dose. My next dose, a maintenance dose, was at week 16 (or 12 weeks after the week 4 loading dose).
On March 19, 2020 California Governor Newsom announced a statewide stay-at-home order. Here is a screenshot from my phone:
Recently both the county and state extended the lockdown to May 1st. With the president and governors talking about opening up the economy again, there is hope this lockdown will end soon.
Until then, Lori and I plan to post a weekly journal updated every day or two to mark thoughts, reflections, and news related to life sheltering-at-home.
This is week 5 of the lockdown.
Sunday, April 26, 2020
Resting and Sabbath
My sabbatical from church ends in about a month. Something I desperately looked forward to was a break from the grind of church ministry. After fifteen years of pastoral ministry without a longer break, together with the challenges and crises the family faced, I desperately wanted some time to rest.
Before I started my sabbatical an acquaintance asked me about my plans. I briefly mentioned travel, writing, and sleeping in whenever I wanted to. He told me those activities would no doubt be life giving. He also stressed the importance of mentally gaining distance and perspective from my daily work.
As I hit third base and turn toward home (excuse the baseball analogy), I can see the past three months have not turned out anything like I expected. I did travel a bit in February, but had to cancel the rest of my trips. I’ve blogged more, but haven’t come around to working on my book or study guide.
As I hit third base and turn toward home (excuse the baseball analogy), I can see the past three months have not turned out anything like I expected.
Sleeping in has been restorative physically, but it has been the distance from work that has renewed me in ways I didn’t anticipate. I have time to think, meditate, and process life. Lori and I can spend (relatively) stress-free afternoons together.
The mental, emotional, and spiritual renewal from this break is exactly what I needed. Although the coronavirus crisis ruined my plans (and of course it is much bigger than me and what I wanted to do), I’m glad the time turned out the way it has.
Finally, on this Sunday, I’m praying for those on the front lines of the Covid-19 response and those personally impacted by the illness. May God be merciful and bring healing to this devastation.
Thursday, April 23, 2020
Coronavirus and Psoriasis (Howard)
UPDATE: I mentioned on Monday that I messaged my dermatologist, Dr. Carroll, about taking Skyrizi before Tuesday. In her reply she surmised why my psoriasis flared recently: skin damage from phototherapy burn and possibly needing Skyrizi more frequently.
Since she said I could inject the medication anytime, I decided to go ahead last night. One dose comes in two syringes, so I injected one on the left and one on the right of my belly button (at least two inches out).
I experienced the normal lightheadedness and fatigue just after the injection. Still some after effects today, but definitely nothing to horrible.
With the lockdown I’ve had more time to write for my column on Everyday Health, The Itch to Beat Psoriasis. In particular, I’ve published three articles about psoriasis and the coronavirus pandemic.
I’ll finish today’s entry with links to each of them.
I have been longing for Howard and I to cook together for many years. His work as a minister is very demanding—both early morning and evening meetings in a given week that would require him to be away from home.
When would come home from work, I would want him to either take some personal time or just spend time with the children. I would figure out the dinner menu. Some days were full for me as a minister’s wife so I would skip cooking dinner completely—get some takeout from a restaurant or fast food.
It was “kid food” anyways, I reasoned, so the kids and I would all feast on fried chicken, hamburgers and fries, chicken nuggets, etc. Especially if Howard attended a small group church meeting, there were often potlucks where he could eat dinner and sample church members’ home cooking.
It was a win-win. Except I felt like something was missing. Long gone were the days when I was at my grandmother’s house helping her fix a homemade meal and then talk with her over washing the dishes afterwards—she would wash, I would dry.
A couple weeks ago I called the Accredo specialty pharmacy to see if they could deliver Skyrizi last Friday in anticipation of taking it this week. With travel to take my daughter to college scheduled at the end of the week I wanted to take it a few days early. My dermatologist agreed. I took the third dose on Monday.
With the third dose injected, and sixteen weeks into the new Skyrizi therapy, what’s the verdict?
I’ll use the same categories to evaluate Skyrizi that I used with Tremfya. Here’s my evaluation:
How well is Skyrizi working for me?
The Verdict: Not as good as hoped, but better than others.
I did start taking Skyrizi with super high expectations. The dermatologists I talked to recommended it to me. I read about how the effectiveness of Skyrizi topped other biologic medications. No question I wanted to try Skyrizi next with the hope that my psoriasis would magically clear.
I’ve experienced a steady anxiety about Skyrizi the last few weeks. My expectations changed after I injected the second dose at week 4. With the next injection at 16 weeks, I figured the medication already in me must do the work.
A graph from the Skyrizi website show the percentage of those taking the medication reaching ninety percent improvement tapering off by week 16. For once I want to be part of that three out of four who get fantastic results from a psoriasis medication.
I Want It Gone Now
In my head I know I need to practice patience when it comes
to psoriasis. Few medications work as quickly and effectively as I want. I want
something like a Tylenol or Benadryl that starts working within the hour. What
I typically get with these drugs is more waiting with less than stellar results
at the end of months of waiting.
I don’t easily admit my impatience. I see myself as a veteran of these psoriasis wars—I’ve seen it all, and nothing surprises me. Expect little. Set the bar low to the ground. Manage expectations. All these platitudes mean well, but do little to curb the appetite that’s grown for something, anything, to truly knock down my psoriasis. The fact remains I’m no different than anybody with a severe chronic condition—I want it gone now.
Alas, it just doesn’t work that way (if it works at all). I want the rabbit, but many treatments act more like the turtle. Slow and steady wins the race, Aesop’s fable declares. But what if the turtle never makes it to the finish line?
Here are some photos comparing when I started Skyrizi and about six weeks later: