A New Year of Milestones, Including 40 Years with Psoriasis

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Happy Lunar New Year 2019! this year is my year, the Year of the Pig.

Happy Lunar New Year! Last week my family celebrated Chinese New Year with a family dinner and red envelopes filled with money from my parents. My mom gave clear instructions to place the red envelopes under our pillows on Monday evening. If we didn’t the money would not be lucky.

I looked forward to this year for many reasons, including being born in the year of Pig along with my firstborn daughter. If you can do simple math you can figure out how old I am (there are 12 years in the Chinese zodiac) and how old my daughter is. Someone wrongly said that I was twelve when I had my daughter (umm, add another cycle of the zodiac please).

It’s a year of milestones for the Chang family. 

Four Decades with Psoriasis

Forty years with psoriasis. I’m trying to let that sink in for a minute. I know it’s not a world record for longevity with this autoimmune condition. Yet, the weight of almost 15,000 days with itchy, scaly skin feels heavy on my mind and heart. So many of those days I felt depressed, beaten, and lost. Some days felt extremely long, like a week or month in itself.

I’m grateful today, though, for much better treatments and control. I’m glad for opportunities to write and advocate for others living with psoriasis for just a few days or years, to those who endured more decades than one can count on a hand. 

I also see that life marched on with psoriasis. I graduated from high school 30 years ago. I got married 25 years ago, and began pastoring churches 20 years ago. My youngest turns 18 in a few weeks, while my oldest turns 24 in a few months. These round numbers represent the passage of a significant amount of time and markers that beg notice as the days whiz by. 

Most of all, I survived. At times I even achieved goals and thrived. Through it all my faith sustained me. I’m not an overly demonstrative person, but this year it’s time to celebrate making it this far and all that is to come.

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Fuller Theological Seminary Doctor of Ministry Commencement, 2016 

Calendar of Milestones

In looking forward to this year, 2019 and the Year of the Boar, here are some upcoming events we are all excited about.

Continue reading →

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:

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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 →

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.

Treat Psoriasis Seriously–World Psoriasis Day 2018

 

Today, October 29th, is World Psoriasis Day. Each year I look forward to this day as I think about the 125 million people around the world who understand on some level what it means to live with psoriasis. Nobody needs to feel alone with this disease.

This special day each year is sponsored by the International Federation of Psoriasis Associations (IFPA). I volunteer as a Psocial Ambassador (blogger) for a member association, the National Psoriasis Foundation (NPF). The theme this year is PsoSerious: Treat Psoriasis Seriously. The NPF encourages those living with psoriasis to pledge https://www.psoriasis.org/world-psoriasis-day/pledge to take one action toward treating your psoriasis more seriously.

My World Psoriasis Day Action: Get a Flu Shot

A couple days ago I got a flu shot in honor of World Psoriasis Day. Three years ago, during Easter weekend, I truly had influenza. I experience high fever, extreme fatigue, and achy muscles among other symptoms. The doctors ruled out sepsis/infection with a blood test and at the same time tested for viruses. Sure enough, I had H3N2 Influenza A late in the flu season.

I sadly missed out on speaking at Good Friday Service and Easter Sunday Worship at church. I hated putting that extra work on my colleagues, but I could not even get out of bed. In twenty years of ministering in churches that Easter is the only one I have missed. On a different Easter weekend I even spoke on two hours of sleep as I kept watch over my sick daughter. Not much keeps me away from church on Sunday.

The worst part of getting Influenza A, though, was not work related. My psoriasis and eczema flares with fever, especially from bacterial and viral infections. It’s a huge trigger for me and I try to avoid getting sick at all costs because of it. That means getting a flu shot is important and necessary to manage my skin during the winter and spring seasons.

A worthy action for me in honor of World Psoriasis Day.


My psoriasis and eczema flares with fever, especially from bacterial and viral infections. It’s a huge trigger for me and I try to avoid getting sick at all costs because of it.


Take Psoriasis Seriously

This year’s World Psoriasis Day resonates with me for another reason as well: psoriasis is serious business. I shared a frustrating part of my psoriasis story at the Experience Innovation Network’s CXO Roundtable in San Francisco last Tuesday. I sat at Table 7 as the patient partner in a design workshop meant for healthcare executives. The workshop led the participants through the steps of designing healthcare around the patient from the beginning of the process. The challenge I presented before my table involved my multiple insurance denials for combination therapy.

As I voiced the story of using multiple treatments to treat recalcitrant psoriasis since childhood I could see the deep concern and compassion on the participants’ faces. They felt frustrated along with me as I told about an inflexible insurance provider that would not cover two expensive medications that I needed to properly treat my psoriasis.

I know I am a few weeks away from becoming covered from head to toe with psoriatic lesions if treatment fails me completely. I can’t stomach the thought of returning to the misery and pain of red, painful, hot, and itchy lesions all over my body. When my skin is flaring that much I can’t hide it all under clothes as I would want to. Unwelcome stares and questions invariably follow me wherever I go.

I’ve also learned how psoriasis causes inflammation throughout my body, not just on my skin. I hate hearing about those studies that show that those with psoriasis are at a higher risk for cardiovascular disease, metabolic syndrome, diabetes, and other autoimmune conditions as comorbidities. With severe psoriasis and lots of inflammation over the years I just might die younger than I otherwise would have.


I’ve also learned how psoriasis causes inflammation throughout my body, not just on my skin.


Indeed, it goes without saying that I must take seriously adopting changes and treatments that minimize those impacts psoriasis might have on my quality and longevity of life.

But Not Too Seriously

At the same time, I’m learning to not take psoriasis too seriously. It’s easy for me to lock my mind and emotions with my condition. I am obviously more than my psoriasis, and life is more than clearing my skin inflammation. I don’t need to take myself or my psoriasis too seriously.

My wife Lori recently reminded me the important role laughter has in healing. I fell in love with her infectious laughter, and her ability to laugh together at some otherwise painful circumstances and challenging situations. We had a silly moment in Wal Mart where we wore plush masks out late on a shopping date (should’ve purchased these for Halloween!)

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Life gets too serious sometimes, so I need to continue to find ways to bring some levity and perspective even in the midst of insurance denials, flaring skin, and frustrating treatments.


Check out the Treaments Tried page for my personal experience taking Otezla and Tremfya!


Personal Family Update: Taking Care of Mom

Finally, I want to give a family update that has impacted my life, including my blogging and social media advocacy. My mom learned she has advanced stage lymphoma a couple months ago. I’ve been flying to Southern California every three weeks to accompany her to oncology appointments and chemotherapy infusions. As I write this I am on my way to Orange County to take mom to the infusion center in Irvine, CA the next two days.

I love my parents dearly and am glad I can be an hour away to help them when needed. Unfortunately, I’ve needed to take a break from writing as work at church, family, and personal health took precedence. Praying mom responds well to treatment and can experience remission after these courses of treatment.

 

 

 

One Year with Tremfya: Can’t Get Enough!

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I love visiting my parents in Orange County, California, especially going to the beach. But this last time around my psoriasis flared during the trip and is only slowly calming down.

The anniversary of my first injection of Tremfya (Guselkumab) came and went in late August. In a way it’s a good sign that the time went by quickly, for as the saying goes, I had more freedom and fun while it knocked down skin inflammation. In fact, I can’t get enough of Tremfya.

Why Can’t I Get More?

Soon after starting Tremfya I recognized a pattern that continues to this day: about six weeks into the eight-week injection cycle the psoriasis begins to break out. It’s a thin, red, guttate type psoriasis. I call it a “thousand points of psoriasis” lighting up my skin. Lots of little dots or eraser head size lesions that peel and leave a dark pink to red raw skin underneath.

I call it a “thousand points of psoriasis” lighting up my skin. Lots of little dots or eraser head size lesions that peel leave a dark pink to red raw skin underneath.

I asked Dr. Carroll, my new dermatologist starting here in 2018, if I could take Tremfya more frequently. Ideally, I could get an injection every four weeks, but I asked for every six weeks. Predictably, my insurance denier provider said no. Upon appeal they also said no.

Like a petulant child I thought I could proverbially stomp the ground by appealing until I broke the insurance company down to give out another couple injection a year. But they are stubborn, like I am as a parent. I asked why and they gave me the “there are no studies to substantiate the effectiveness of taking Tremfya more frequently,” and the “FDA approves Tremfya for every eight weeks” so you are out of luck kind of answers.

I get it. It’s $10k for one injection. But that one or two extra injections could make a huge difference in my quality of life. Thankfully, they approved the normal dosage so that my quality of life is substantially improve already.

But wow it would be great to get a little more.

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Here is my right arm taken on September 18, 2018 at the end of my eight week Tremfya cycle. Relatively flat, red spots that more peel than flake and not itchy. They tend to start going away a couple weeks after taking the injection.

It Would Be Great for Stress Events

It’s not just that I want to pry the insurance provider’s fingers off of that precious box of Tremfya comes in for selfish gain. I need it for those stressful times I’m working at the church, helping out the family, or madly meeting blog deadlines. Continue reading →

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 →