psoriasis, Psoriasis Treatments

Starting Skyrizi for Psoriasis: Week 0

It happened faster than I could mentally prepare myself—I’ve stopped Tremfya (Guselkumab) and started Skyrizi (Risankizumab) on Friday. 

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 offered Taltz (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.

I started taking Tremfya on August 21, 2017 and Skyrizi on May 31, 2019. I didn’t quite make it to two years, but it did keep me moderately under control for almost 650 days (and 56 million seconds)!

—————————————————

Read about my two year journey with Tremfya

—————————————————

Skyrizi Week 0

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.

May 31, 2019 Photos to record my psoriasis at the start of Skyrizi treatment. (Above) Back and upper arms. (Below) My leg (left) and arm (right) showing psoriasis lesions broken out.

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.

Prayers Welcome

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.

Standard
psoriasis, Psoriasis Treatments

85 Weeks with Tremfya: Finally a New Dosing Schedule

IMG_2640.jpeg

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 since Week 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.


Follow my Tremfya journey!

Tremfya (Guselkumab) Week One  

3 Weeks with Tremfya: The Waiting Game

8 Weeks with Tremfya: It’s Working!

16 Weeks with Tremfya: The Verdict?

24 Weeks with Tremfya: A Pattern Emerges

38 Weeks with Tremfya: The Q&A Edition

42 Weeks with Tremfya: Coping with a Skin Flare

Tremfya is much, much harder to get than I imagined

One Year with Tremfya: Can’t Get Enough!


Is My Skin Better with More Frequent Dosing?

The quick answer is not really.

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 →

Standard
Advocacy, psoriasis

My Psoriasis Origin Story Comic Redrawn

Happy New Year everyone!

Thanks to my daughter Lydia for redrawing my psoriasis origin story comic. She surprised me on Christmas with it. I used the comic to speak to teens at the most recent National Psoriasis Foundation (NPF) volunteer conference in the summer of 2017.

My psoriasis was first triggered by that unwashed sleeping back when I was an elemetary school student:

dad_comic.jpg

Here’s the description I wrote for the comic in the original Everyday Health The Itch to Beat Psoriasis blog titled My Psoriasis Origin Story and the Power of Volunteering: Continue reading →

Standard
Family, Living with Psoriasis

Why I Hate Asking for Help

This past week the pain in my shoulder landed on the chart somewhere between five and seven out of ten. I injured it in my exuberance to load my daughter’s new bicycle into the back of the CR-V. It’s nothing critical, but annoying enough that I can’t lift at certain angles or rotate in a full range of motion.

The primary impact of this pain in the shoulder is my inability to reach the upper middle part of my back. I normally stretch my arm to apply topical medications and moisturizers to those harder to reach spots. The psoriasis doesn’t pop out there as much, but recently my atopic dermatitis flared everywhere with the cold, winter-like weather here in Northern California.

Each morning and evening when I apply topicals I need to decide whether I will try to reach those spots myself or not.

I’m Going to Do it Myself

My attitude the entire week is to take care of myself—injury or not. In fact, I don’t want, or need, help.  The first couple times I tried to reach my upper back I winced. The next time, after sleeping on that shoulder, I yelped. I exacerbated the injury each time, too, which made me feel stupid and foolish.

One time I felt so much agony that I did ask my wife to apply moisturizer to my back. As she pulled her hand out of the jar of Cetaphil cream I immediately knew she had too much. Decades of applying creams trained me to extract just the right amount of cream or ointment for the skin surface area in question.

As an amateur she could not possibly know how much the skin on my back needed. But that was way too much. I thanked Lori. Then, once she left the room, quickly grabbed a towel to wipe off the excess moisturizer. My skin still felt greasy and uncomfortable after toweling it off a few times.

I determined to not ask her again.

Is There Another Way?

Last night my back became quite itchy with eczema rashes. I longed for a back scratcher but could not find one. I figured the primates at the zoo scratch each other’s backs, so I should at least see if Lori would scratch my back. But, alas, she fell fast asleep on the couch. I desperately needed to improvise.

The thirty-gram tube of hydrocortisone looked enticing. It gave me an extra few inches reach and had a not-too-sharp edge at the bottom. Like Job from the Bible scraping his boils with pottery shards, I soothed the itch on my upper back with that corner edge. Looking around to see if anyone observed my crude scratching technique, I put it down pretending like nothing happened.

My mind them began to brainstorm ways I could put medication and moisturizers on my back. I wondered aloud if anyone invented such a tool, and that if they had not, that maybe I could invent it. I thought, even without an injured shoulder, some people might not have the necessary flexibility and reach.

I’m still working on the perfect invention. If you know of some similar contraption let me know!

My Independent Streak Begins

Hurting my shoulder made it clear to me why I hate asking for help: pride and independence. I help others for a living as a pastor, husband, father, and friend. People message or call me to talk about or help solve problems. Mutual support is okay, but I believe that if you can do something yourself, then you absolutely should.

My streak of independence no doubt comes partly from necessity and parental training. My parents literally worked night and day to make ends meet as immigrants from China/Taiwan. My dad worked as an engineer in the day, then went to my mom’s small retail gift boutique in the evening to help with the family business. Mom worked seven days a week at “the store” for the better part of a decade after I started kindergarten.

As a latchkey kid I largely took care of myself, including applying my own medications. Back then, as an elementary student, I applied mild topical steroids and 2% LCD coal tar in Aquaphor on my psoriasis. My dad even taught me how to order medication by calling the pharmacy, and let me pick them up at the counter as he stood by to pay.

My strong sense of pride also derived from my desire to prove to others and myself that, despite having chronic illnesses, I could achieve great things with minimal support. I pride myself in hard work and perseverance no matter the obstacle. I earned good grades, and later advanced degrees, through consistency and determination.

This bum left shoulder, though, humbles me every time I need to reach those few square inches on my back.

Fine, I’ll Ask for Help

Now I’m determined to stop reinjuring my shoulder by overstretching its current limits. It needs rest, and it needs to heal. So, somewhat less reluctantly, I will ask my wife again for help after I take my shower.

The pain in my shoulder is a metaphor for life. Asking for help often connotes weakness, and no one wants to admit they are weak. Knowing when I need help, however, is true wisdom. Asking for support, while humbling, can lead to the greater good of intimacy through vulnerability. Reciprocity, when not demanded, becomes mutual care.

I also recognize I lose something when I don’t ask for help when I really do need it: the opportunity to connect on a deeper level with others. Sure I can do a lot by myself. But I lose out on sharing moments of triumph and loss, of joy and sorrow, and of journeyingup the tall mountain of life’s challenging peaks with friends who care.

Inspirational Verse: Galatians 6:2

Carry each other’s burdens, and in this way you will fulfill the law of Christ.

Standard