A big happy Valentine’s Day to my wife of over 25 years, Lori. I’m grateful for not just the quarter century together, but more importantly all the ways we’ve grown personally and relationally since those early days of college.
It was love at first talk. When Lori and I met in our last year at college, we connected immediately. Sure, there was a physical attraction — and we joined the same Christian group at the University of California in Davis. But the ability to talk openly about living with chronic health conditions bonded us from day one.
We still care for each other through the health ups and downs with listening ears and helping hands. I wouldn’t have wanted to share my life with anyone else.
For this our 28th Valentine’s Day together I would like to share a short letter to my best friend:
Lori and I joined a Christian conference for graduate students in the beautiful Santa Cruz mountains. We found this prayer chapel during one of our walks. The trip marked our first weekend on leave from the church.
Happy New Year! I know it is almost mid-February, but it’s my first PsoHoward entry of the year. I’ve been quite busy preparing for a personal leave that started this month. Now that I will be on four-month break I hope to come back to writing regularly.
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:
I can’t believe I finished my third week of taking Skyrizi (Risankizumab). In the coming week I take my second dose. This dose is a loading dose administered at week four. The dosing moves into every twelve weeks thereafter.
The biggest questions I have when I take a new medication are if it will work, when it will start working, and will I have side effects. See below for my updated impressions on these three questions.
Will Skyrizi Work to Clear My Psoriasis?
This is a crystal ball question to be determined in the coming weeks. But if you make me give an answer of what I predict I’ll tend to take the pessimistic view. When a drug claims that X out of 10 people who took it during clinical trials reached PASI 75 or 90, or even cleared, I’m skeptical I would be one of them.
I’m usually the X out of ten that did not reach any notable level of psoriasis clearance. I know, I know. Past results do not predict future outcomes. Too many variables must play out before making any conclusions. My body changes over time. New medications have different mechanisms of action in my body than others. But I’ve faced disappointment after weeks and months of waiting on a new drug enough times to not get my hopes up.
In clinical trials, 3 out of 4 people achieved 90% clearer skin at four months, after just two doses
Of those, nearly 9 out of 10 sustained 90% clearer skin through one year
Also, 8 out of 10 people achieved clear or almost clear skin at four months, after just two doses.
Number 1 and 3 sound like the same results told in two different ways. Number 2 says that those who did respond sustained it after a year. Okay, awesome numbers to be sure. I just hope I’m not the 1 out of 4 or 10 who doesn’t get a great response.
The conversation about starting Skyrizi began with a message to Dr. Christie Carroll on the day the FDA approved Skyrizi for moderate to severe plaque psoriasis in April. She told me that the prescription request might run into problems with gaining insurance approval for a brand new medication. Also the pharmacy probably did not yet have it in stock and ready to ship. She offeredTaltz (Ixekizumab) as an alternative.
I told her about the discussions I’ve had with other doctors and their thoughts on which biologic I could take. Even though they don’t know my personal situation as well as Dr. Carroll, they thought very highly of Skyrizi. With the data from clinical trials looking amazing (the Skyrizi website claims that “3 out of 4 people achieved 90% clearer skin”) I told her I could take Taltz first, but if it failed, I wanted to try Skyrizi eventually.
At my next dermatologist appoint on May 17th Dr. Carroll told me that with the passing of a few weeks, and a new staff member to file prior authorizations, we could give Skyrizi a try. I would first need to get blood tests, especially and updated TB test before starting the new biologic.
Just over a week later I received a cryptic email from the specialty pharmacy, Accredo, that my prescription request was being filled. The next day I received a letter from my insurance provider stating they approved the prior authorization for me take Skyrizi. I immediately signed up for Skyrizi Complete, a service by AbbVie that would provide support such as copay assistance while taking Skyrizi.
A quick call to Accredo ended with scheduling a next day delivery of my first dose. The Nurse Ambassador, Adele, from Abbvie also agreed to call me in the late afternoon to assist me with the first dose the next day.
Two weeks after Dr. Carroll submitted the prior authorization request for Skyrizi I found myself injecting my first dose–one syringe on the left side of my abdomen and another on the right side. Hopefully in the future the dose will be one pen or syringe, but I didn’t mind the two injections this time around.
First Reactions and Impressions
Less than a week into treatment I’ve experienced a myriad of emotions including hope, anxiety, excitement, and fear. I wouldn’t try a new biologic unless I felt hopeful and excited it might clear my psoriasis–even if for a season. The anxiety and fear of what side effects I might feel, and what it might be doing to my body besides cleaning my psoriasis is just as real.
Physically, I experienced some headache, lightheadedness, and fatigue after the first dose. It’s only been about five days so I’m not going to make too much of it. No doubt someone from the manufacturer will want to talk to me about my experience (they tweeted as much!) Not to worry, I will talk to my Nurse Ambassador soon about my experience so it can benefit others.
My psoriasis is about the same. Every time I’ve checked it the last few days it’s about the same. So nothing to report there yet, although I wish I could say it worked so quickly.
Finally, if you are praying person, I covet your prayers. I didn’t expect to start Skyrizi so quickly, and I’m still trying to figure out how I feel about trying my 6th (!) biologic for psoriasis since 2003. But whatever happens I know I’ve been through the lowest of lows with this disease and made it through with the strength of God.
The view from my office during a heavy thunderstorm. A fitting picture of how I’ve felt the last couple weeks with worsening skin conditions.
My how time passes. Almost six hundred days in fact since I started using Tremfya (guselkumab) to treat recalcitrant psoriasis. The twelfth injection three weeks ago held special significance as the first dose at the new every six-week dose schedule. With two extra syringes from my dermatologist I can try out every six-week dosing for about a year.
I figured sinceWeek 24 that if I could take Tremfya more frequently I could avoid the inevitable flare that comes at the last two weeks before I get my last dose. Now with two extra boxes in my refrigerator I could try it out.
Thanks to my Doctor
First of all, I want to give credit where credit is due. My dermatologist, Dr. Christie Carroll, offered two sample injections to me late last year after my insurance provider denied our request for every six-week dosing.
She took the initiative to sign them out to me and wrote a note with my name on them. She mentioned, unfortunately, that she might not be able to give me more samples in the future as she faced pressure to give up samples. I don’t understand all the ins and outs of why she might not be able to get Tremfya for me in the future. But I’m glad that she looked out for me to find a way to try it.
Almost four weeks into the new dosing schedule I cannot say that I notice as much improvement than I expected. I hoped to side step that flare, but it came anyhow. Along with the psoriasis dotting my trunk, legs, and arms, my eczema flared badly as well. I’ve lost sleep, concentration and productivity due to the constant itchiness and irritation.
I can think of a few problems with making any conclusions about the effectiveness of this dosing. Continue reading →