Skyrizi Week 16: The Verdict?

The Chang family trip this summer included a trip to Crater Lake, Oregon. I especially enjoyed the trip with improved psoriasis.


This week marks the sixteenth week since I started taking Skyrizi to treat my stubborn psoriasis. I took my first dose of two 75mg injections on May 31st. My second dose came four weeks later on June 28th and anxiously awaited results. Now I’m on every twelve-week dosing with the third dose this week. 

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.

Continue reading →

Skyrizi Week 3: Three Questions Waiting to Be Answered

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.


Follow My Skyrizi Journey!

Starting Skyrizi for Psoriasis Week 0


Skyrizi’s website makes the following claims:

  1. In clinical trials, 3 out of 4 people achieved 90% clearer skin at four months, after just two doses
  2. Of those, nearly 9 out of 10 sustained 90% clearer skin through one year
  3. 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.

When will Skyrizi Start Working?

Continue reading →

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)!

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Read about my two year journey with Tremfya

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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.

August is Psoriasis Action Month

Today marks the beginning of a month long focus on taking control of your psoriasis. The National Psoriasis Foundation (NPF) produced this graphic with a comment on how meaningful treating my psoriasis has been for me:

NPF 2018 Action Month Howard Chang

In the past August was designated “Psoriasis Awareness Month.” Recently, though, the change from awareness to action made sense with the emphasis on doing something to make a difference in your quality of life. Now more than ever those of us with psoriasis have many more options to treat and manage it.

I know it’s easy to get discouraged, or get in a rut with psoriasis. My hope is that this month each peson with psoriasis feels empowered to make one change to better their health. My change? Is it cheating to say that I’ve been experimenting with my new phototherapy unit? If so, I definitely need to reexamine my stress levels as July was off the charts.

Things Change, Clear Can Happen

The NPF is sponsoring a number of activities around the theme “Things change, clear can happen” for Psoriasis Action Month. From the NPF:

Things change. Your symptoms change. Your health changes.

With advancements in the number of treatment options available, now more than ever, it is easier to treat psoriasis – and the results can be life changing. Regardless of the type of treatment (phototherapy, topical treatments, systemic drugs or biologics), patients who manage their psoriasis report a higher quality of life, less absenteeism at work and are more productive. Psoriasis Action Month focuses on empowering people with psoriasis to take control of their disease.

A good place to start is to take an online quiz to assess how much psoriasis impacts your life. I took the quiz and was not in the least surprised to find that I got “Severe impact.”

Consider Your Options

If your psoriasis is severe like mine you know it takes quite a bit of effort and energy to manage this unpredictable immune condition. But it’s eye opening to see all the options that are out there to at least try. Some old treatments can work again, too.


As the calendar turned over to August this morning I thought about the long journey that took some fifteen years before I could find some semblance of psoriasis control.


As the calendar turned over to August this morning I thought about the long journey that took some fifteen years before I could find some semblance of psoriasis control without overly worrying about what my treatments might be doing to my overall health.

Cyclosporine kicked me out of a horrible flare that left me nearly unable to function in the mid-2000s. It took over two years of trying this and that before I found cyclosporine. Those years I will never get back with much regret at lost time and opportunities.

But then I became somewhat dependent on cyclosporine. Every treatment I tried to get off of cyclosporine failed. I used it off and on at high and low doses for over a decade despite FDA warnings to the contrary. I did take breaks, but within a couple months into the break my skin raged with inflammation. Even biologics I tried only worked with cyclosporine, not without. My blood pressure began to rise along with my triglycerides.

Today I’m grateful for the many resources and ways I’ve been able to get under better control over the past year or so since I started taking Tremfya and using phototherapy. Some treatments, like Otezla, didn’t help me. Still, though, I appreciated the option to try something new even if in the end the results didn’t match expectations.

For me this psoriasis action month is about taking a step forward, courageously trying something new, and not giving psoriasis too much power in my life.

 

I look forward to sharing more of my recent treatment journey in a couple upcoming guest blogs, on The Itch to Beat Psoriasis on Everyday Health, Plaquepsoriasis.com, and here on Pso Howard!

This August commit to taking action to improve your life with psoriasis and please feel free share how it’s going.

 

 

Tremfya is much, much harder to get than I imagined

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I took this photo of the sunset over the ocean on last month’s Alaska cruise. It reminds me of calmer waters and more joyful times as I persisted in getting my Tremfya prescription right over the past few weeks since.

The journey began in May simply enough: get Tremfya renewed for another year at a new specialty pharmacy. I have continued to use my previous dermatologist’s prescription this year, but with a new doctor I needed a new prescription at a differeent pharmacy starting this summer.

My dermatologist and I decided to request every 6-week dosing, which we both thought would be denied. But it was worth a try, right? No. Denial came swiftly and ended up costing me a lot of time waiting and on the phone.


My dermatologist and I decided to request every 6-week dosing, which we both thought would be denied. But it was worth a try, right? No.


For me simple is never that simple when it comes to getting the newer, more expensive (good) medications to treat severe psoriasis.

(Barely) Qualifying to Receive Tremfya Coverage

After the DENIAL for every 6-week dosing schedule for Tremfya, I was glad to see they approved every 8-week schedule. It’s what I expected anyhow since it makes financial sense for the insurance provider to not pay more than it has to, even though I’ve shown I need a higher frequency dosing.

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With that letter describing how 6-week dosing is not covered, WHA did explain the criteria for receiving coverage for Tremfya. I couldn’t believe how incredibly restrictive the criteria are, including failing two of the newer medications/biologics:

WHA [Western Health Advantage] covers Tremfya when all the following criteria is met:

[1] when prescribed for moderate to severe plaque psoriasis confirmed by a dermatologist (psoriasis affects 10% or more of the body; psoriasis involves hands, feet, and neck or genitalia).

AND

[2] prescribed by a dermatologist

AND

[3] the patient has tried and failed topical therapy (e.g., Dovonex, Tazorac, or other topical steroids),

AND

[4] documented failure or clinically significant adverse effects to one of the following therapies alone or in combination, unless contraindicated: methotrexate or (if methotrexate in contraindicated) cyclosporine, acitretin, or a trial with PUVA or UVB for at least 3 months unless intolerant,

AND

[5] documented failure or significant adverse effects to at least two of the following: Humira, Otezla, Stelara, or Cosentyx.

Initial approvals are considered for 3 months to assess patient’s response and renewals for one year.


I couldn’t believe how incredibly restrictive the criteria are to receive Tremfya, including failing two of the newer medications/biologics.


This is how I imagine the insurance provider reviewer went about his job when fe came to my case: Continue reading →

The Home Phototherapy Unit Arrives!

A few weeks ago the narrowband ultraviolet B light (NUVB) panel finally arrived. My dermatologist and I decided to try home phototherapy after determining that Tremfya (guselkumab) alone would not adequately suppress my psoriasis or address my atopic dermatitis.

I gave up, though, after my health insurance denier provider rejected the initial prescription, the first appeal, and then the appeal to the denial. I know I shouldn’t stop fighting, but I figured I needed to choose my battles wisely. I lost this round and that was that.

A Gift Arrives Via Freight Truck

As the delivery truck pulled up to my driveway I thought about how a couple dozen people generously gave to the GoFundMe campaign started by a parishioner at church. The over four thousand dollars raised allowed me to order, and now take delivery, of a Daavlin Series 7 eight bulb NUVB panel with dosimetry timer.

The over two hundred thirty pound wooden box initially looked like a crudely constructed coffin. But inside contained another tool in the arsenal to combat inflammatory immune responses on my skin. Here I’m holding the protective grills that install over each pair of six foot light bulbs:

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Continue reading →

2nd Dermatology Visit: Waiting and Delaying Treatments

This time I made it on time for my dermatology appointment. After the first visit to my new dermatologist almost turned out a disaster, I made sure to double check the appointment time. Yes, I needed to make it to the clinic on Tuesday at 10:00 a.m. for this second visit.

You’d think that after four decades of seeing doctors I would feel comfortable at clinic appointments. But in those few minutes I spend with the dermatologist decisions will be made about my health that will impact my life for weeks to come.

With a new dermatologist and healthcare provider system I felt intense anxiety for that appointment. My elevated blood pressure told the same story: seeing the doctor is a stressful event for me. Even so, I overcame my anxieties to closely collaborate with Dr. Carroll on what’s next for my skin treatments.

Getting Acquainted

Thankfully, the doctor visit went much better than I expected. At the outset I spent a couple minutes getting acquainted with Dr. Carroll. I first shared my psoriasis column on Everyday Health, The Itch to Beat Psoriasis with her. I also talked about my volunteer work with the National Psoriasis Foundation. Dr. Carroll shared how she studied under a prominent psoriasis researcher and physician and supported the Foundation’s efforts. She explained her philosophy of putting patients first, even if they are late like I was last time.

I thought the exchange helped to break the ice and develop rapport. I hoped that by sharing some of my life with psoriasis she could trust I knew my skin conditions well enough to input on treatment decisions. I also felt more comfortable that, based on her training and experience, she could manage the challenging case that is my psoriasis and atopic dermatitis.

Besides getting to know a new healthcare system and my new dermatologist, I needed to consult with her on a couple issues looming for my health and skin care.

Tremfya Adjustment

I’m convinced now that the pattern I saw emerging with my psoriasis on Tremfya treatment at week 24 continues. The normal dosing schedule for Tremfya is one injection every eight weeks. By week six or so, however, my psoriasis tends to begin to worsen. It takes two or three weeks after the injection to get back to a more controlled state–if at all.

I would like to try taking it every 4 weeks, but that would double the injections to 13 annually. With a cost of ~$10,000 per injection you can do the math. Every 8 weeks is about 6.5 injections per year, with every 6 weeks about 9 injections. Continue reading →