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 →

42 Weeks with Tremfya: Coping with a Skin Flare

Beautiful flowers in Sitka, Alaska, taken during a stop on our summer Alaska cruise vacation with family.

A couple weeks ago marked the 42nd week on Tremfya (guselkumab) and the 7th injection. I started in mid-August last year with about ten months elapsed since that first injection on the day of solar eclipse in August.

At this point in my treatment cycle I hoped to have more stability with my skin. But skin flares do happen even while taking the best medications.

What a Bad Skin Flare

Somehow I think that if I’m taking a super expensive biologic for psoriasis that I’m entitled to clear skin. Expectations often wreak havoc on my mood when I think this way. As an optimist and idealist it’s quite easy to bring those unrealistic expectations to the new medications I take.

When my skin flared like a wind swept wildfire a month ago I felt overwhelmed. Between the darker red spreading psoriasis spots and the generalized bumpy rash all over my body I could only feel normal skin in a few places. My mood darkened as I went into coping mode.

When my skin flared like a wind swept wildfire a month ago I felt overwhelmed.

A few factors appeared to contribute to the flare: increasing phototherapy dosage too quickly; Tremfya losing effectiveness at the end of the 8 week cycle; completely stopping cyclosporine; stress at work with a demanding spring; and a busy schedule with end of school year activities for the kids.


Follow my Tremfya journey!

Tremfya (Guselkumab) Week One  

3 Weeks with Tremfya: The Waiting Game

8 Weeks with Tremfya: It’s Working!

12 Weeks with Tremfya: The Third Injection

16 Weeks with Tremfya: The Verdict?

20 Weeks with Tremfya: Read the Instructions! (4th Injection)

24 Weeks with Tremfya: A Pattern Emerges

28 Weeks with Tremfya: Still Working? (Injection #5)

38 Weeks with Tremfya: The Q&A Edition


Employing Poor Coping Strategies

I’m not proud to report that during the flare I didn’t cope well at all. I did continue my skin care routines including taking a break from phototherapy and using steroids with wet wraps a couple times. But my expanding gut tells me that I ate way too much junk food. All those pastries, ice cream, donuts, extra shots of espresso, greasy burgers, and chips of all sorts no doubt made my skin even worse.

I also tend to stay up later when my skin flares. In an ineffective attempt at avoiding caring for my skin I delay my shower and night time skin routines. Instead I play games on my cell phone, (binge) watch Netflix shows, work on emails, or read online sports news. Eventually I get going on what I need to do, but much later than I’d like. The next day I’m naturally tired and wanting naps in the afternoon.

I really could use more margin in my life for when difficulties like skin flares inevitably come. It’s not that I don’t know better ways to cope when my health tanks. But if I’m already tired and stressed I don’t have the will nor the energy to counter those cravings to eat junk food and stay up late.

I really could use more margin in my life for when difficulties like skin flares inevitably come.

Thankfully, vacation came at a great time. A week on an Alaska cruise settled my mind, gave me much needed time away from work, and allowed the new Tremfya injection to start working.

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Waterfall next to Mendenhall Glacier in Juneau, Alaska

Treatment: A Work in Progress

I hear stories of how long it takes to finally find a treatment plan that effectively manages psoriasis while minimizes risk. Some people go through multiple treatments, including combinations of various medications such as topical, phototherapy, systemic pills, and injectable biologics.

I feel like I’ve been trying to find that elusive treatment plan for the past twelve years. When the systemic Soriatane with phototherapy stopped working for me in the mid-2000s my skin would not stop peeling and scaling. Pure misery. I tried new biologics, went back to methotrexate, and even tried coal tar. Nothing worked.

Cyclosporine turned out to be the most effective medication for my psoriasis and eczema. However, it is only FDA approved for psoriasis for one year because of it’s toxicity to the kidney and other side effects. I used cyclosporine off and on for the next decade while trying each new biologic, although the breaks would only last a couple months before I needed to start up again.

Psoriasis treatment just feels like a work in progress, especially when that bad flare comes along unexpectedly.

Now I’ve finally stopped cyclosporine while taking Tremfya and experimenting with phototherapy. Psoriasis treatment just feels like a work in progress, especially when that bad flare comes along unexpectedly.

Time to end this entry with a photo of a cool glacier in Alaska to remember those calmer days. Too bad I can’t just go back here whenever my skin flares!

Margerite Glacier

Glacier Bay National Park, Alaska

I Picked up My Daughter from the Psychiatric Hospital for the First Time on Father’s Day

On June 20, 1995 Lydia’s birth made me a father for the first time. After a long two-day induced labor and delivery, she came out to welcome the world. The nurse prompted me to cut the umbilical cord and then let me hold her–my first act as a newly minted father. I could not wipe the smile off my tired and weary face as I stared into that tiny newborn’s sleepy face.

Lydia Dad Hospital

Lori returned to work ten weeks after giving birth to teach middle school students. I started seminary two months later with taking care of Lydia as one of my primary responsibilities. For the next four years I stayed home with Lydia while I worked toward a Master of Divinity degree. My days filled with studying, changing diapers, feeding bottles, and taking her with me to run errands.

Lydia Dad Home

Little did I know the bonds she and I formed in those early years would prove to be so vital in saving Lydia’s life almost seventeen years later.

Teenage Struggles or Something Else?

During her teen years Lydia experienced ups and downs that seemed typical for her peers. She did well academically and engaged in extra-curriculars like cross-country and service clubs. But she struggled with finding good friends. At home she felt the pressure of being the big sister with two younger siblings. At church parishioners held her to higher expectations as the pastor’s daughter.

Little did I know the bonds she and I formed in those early years would prove to be so vital in saving Lydia’s life almost seventeen years later.

Nothing set off red flags as the teen years certainly present a unique set of challenges for young people.

Then that dreaded red flag went up high in late March 2012. Lydia woke me up one morning before going to school to ask if she could skip school that day. Her eyes looked saucer-like and afraid. Her hands were shaking. I said of course. She then showed me multiple cuts that she had made on her wrists and arms. She expressed her suicidal feelings and need for help.

Up until that morning she mostly kept herself hidden from her family members, often locking her door. She would have kept her desperate situation to herself if it weren’t for one of her friends who convinced her she needed to reach out to us. She ultimately exposed her struggle to me becasue she didn’t want her family to find her in a pool of blood.

Traumatic Break-Up on Good Friday

Easter and Christmas hold a special place in the Christian calendar and at church. As a pastor I look forward to those times of remembrance and celebration. But they happen to be busier times demanding my devoted energy and time. Lydia’s first boyfriend decided to add to the stress of the Easter season that year by breaking up with her on Good Friday.

I never felt as afraid for Lydia as I did that Easter weekend. The previous weeks she started therapy, seeing a psychiatrist, and taking medication. She started to learn better ways to cope than self-harming. That weekend, though, she wanted to cut herself and felt suicidal again. Her psychologist thought we could handle her situation at home, but we needed to make some adjustments to keep her safe.

On Easter Saturday I spent half the night locking away sharp objects and medications. You never know just how many objects in a house can be used to cut until you intentionally search for every last one of them. Hours later, confident Lydia would sleep, I took a nap before heading out to church.

On Sunday, April 8th, I preached the Easter message on two hours rest with a flood of thoughts about Lydia on my mind.

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Lydia and I at the Grand Canyon during our family trip in June, 2009.

Relapse in June

Those next weeks we learned how to better monitor and advocate for her. We went to multiple medical appointments a week around Los Angeles County. Her mood seemed much improved and stable, but then she relapsed in June while on our vacation

On Easter Saturday I spent half the night locking away sharp objects and medications. You never know just how many objects in a house can be used to cut until you intentionally search for every last one of them.

Originally, the family planned a trip to Yellowstone National Park via Las Vegas and Salt Lake City. Due to Lydia’s health we changed plans. Our caring friends in the San Francisco Bay Area, where we previously lived, opened up their unoccupied rental unit for us.

As soon as we arrived I looked for and hid any knives and scissors in the townhouse. I didn’t know at the time, but Lydia beat me to it. She grabbed a large kitchen knife to tuck away in the room she stayed in.

After a week in the Bay Area we started to drive back to Southern California. Instead of driving the four hundred plus miles in a day, we decided to stop in Monterey for a night. Lydia’s two younger siblings noticed cuts on her upper legs and thighs. I also noticed a number of cell phone calls from her phone to locations around the country.

At Fisherman’s Wharf she broke down in tears. A quick dinner near the motel turned into a long evening.  Lydia shared how she had been cutting again, with that knife from the townhouse, and now wanted to burn herself.

At Fisherman’s Wharf she broke down in tears. A quick dinner near the motel turned into a long evening.  Lydia shared how she had been cutting again.

The next day we piled into the minivan in the morning to make the final trek back home. Along the way I called a couple of her health care providers. Her psychologist suggested we take her directly to the emergency room at a local hospital. I thought if I could drive her closer to home the family could use home as a base to care for her. She sat in the back row of the minivan blasting music through her earbuds to ward off the voices in her head.

We finally arrived at our destination, Kaiser Baldwin Park Hospital, to meet my parents and dog, Teddy. My parents took the younger two children home while Lori and I stayed with Lydia at the hospital. Later that evening an ambulance transported her to to a psychiatric hospital in Cerritos, about 25 minutes drive away.

First Timer in the Psychiatric Hospital

She stayed in the psychiatric hospital for about six days in the adolescent ward. During that time we visited her every day during visiting hours, often battling LA commute traffic. We cleaned up her room, and gathered up several pairs of sharp scissors that had fallen behind her bed.

We didn’t tell the church or many friends about Lydia’s condition. We wanted to protect Lydia’s privacy first and foremost. In her mental state at the time she could not make a sound decision about whom to tell or not tell. We also didn’t know how others might react to her condition. Stigma related to mental illness continues today as back when Lydia first learned of her mood disorder.

On Saturday, June 16, 2012 we learned she would be discharged the next day, Father’s Day, in the afternoon. To not raise any undue concern or alarm at church I decided to continue with my morning duties. I preached the Father’s Day message that morning without anyone but my family knowing about Lydia’s hospitalization.

On Saturday, June 16, 2012 we learned she would be discharged the next day, Father’s Day, in the afternoon.

The family went to pick her up directly from church. Lydia gave me a big hug when we first arrived. After receiving discharge paperwork and directions we took our baby home from the hospital just as we had done seventeen years before.

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The two of us travelled to Chicago together when I attended the HealtheVoices conference in April. It was her first time at Chicago’s O’Hare airport.

Bipolar Type 1 Diagnosis

That week after discharge Lydia’s psychiatrist confirmed her diagnosis: Bipolar Disorder I w/Psychosis. These past six years I’ve learned more about bipolar disorder and fathering than all the previous years combined. The continuing story of Lydia’s battle with bipolar is for another day.

For today, though, on this Father’s Day, I remember when I brought Lydia home from the hospital both twenty-three and six years ago. I thank God for His mercy and protection over our lives and feel confident that He will continue to watch over Lydia in the days ahead.

Lydia will enroll in the University of California, Davis in the fall to study psychology and animal behavior. Check out her blog Sincerelydia to learn more about her life and mental health journey.

My Surprise Visit to Wrigley Field

The day after I turned sixteen years old I took my driver’s license exam. That summer I utilized my license to deliver office supplies around the Bay Area and drive to Southern California with my friend. The highlight of our SoCal trip included taking in baseball games at Jack Murphy Stadium (San Diego) to watch the Padres, Dodger Stadium (Los Angeles) to see the Dodgers, and Anaheim Stadium (Orange County) to watch the Angels.

That’s when my goal of visiting every MLB baseball stadium in American began.

Baseball holds a special place in my heart. Playing Little League baseball as a nine-year old introduced me to American culture. I grew up in an immigrant Chinese family and faced discrimination in those early days. But baseball served as an outlet for an energetic young boy facing uphill challenges with psoriasis and bullying.

Read about My Painful Memories of Living with Psoriasis as a Teenager on my column The Itch to Beat Psoriasis at Everyday Health

My hard-working dad took me to San Francisco Giants games when I earned free tickets for good grades. The Giants gave away tickets to evening games at the frigid and windy Candlestick Park. Still, I loved going to those games watching Jack Clark, Darrell Evans, and Greg Minton out on the diamond.

As a kid I only dreamed of ever seeing a game at places like Fenway Park or Wrigley Field.

Landing in Chicago for HealtheVoices

In late April my daughter Lydia and I flew into Chicago for the HealtheVoices conference–a gathering of over 120 online patient advocates from some forty different disease states. Lydia mainly wanted to see a friend and visit Chicago sites. Since I had more time the first two days we set aside time to see the town together before I became busy with conference meetings.

The first day we went to Millennium Park and Navy Pier. Day two, after my meeting ended in the mid-afternoon, we headed out for an early Chicago deep dish pizza dinner. The walk from the hotel took a bit longer than expected. We needed the exercise so I didn’t mind. By evening, though, the cold wind whipped up reminding me Chicago’s moniker is “The Windy City.”

Riding the “L” After Dinner

I couldn’t help but think about the television show ER, set in Chicago, where the doctors would take the “L” subway system after their shift ended. I wanted to ride the “L” just once to honor that memory. A ride back to hotel turned out to be the perfect excuse to find the nearest station.

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Once seated on the train I figured out our stop for the hotel would only take a few minutes. On the subway map I noticed the Addison Street station stop a bit farther north than the stop for the hotel. I also somehow remembered that the Chicago Cubs play at Wrigley Field on Addison Street. A quick Google search confirmed we could see the baseball stadium if we took the “L” a few more stops.

Later we learned that the neighborhood around Wrigley Field isn’t necessarily the safest. Unknowing tourists traveling on a whim sometimes don’t know any better. Besides, with wanting to see the San Jose Sharks playoff game against the Las Vegas Golden Knights later that evening, we’d only have enough time to take a quick picture.

To my surprise the stadium lights lit up the night sky. People milled around the stadium and storefronts welcomed customers. All signs pointed to Wrigley Field playing host to a Cubs home game.

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Buying Tickets from a Reseller (Okay, Scalper)

We ran around the stadium to find the front entrance where I could take a quick picture. The tied game against the Milwaukee Brewers had entered the bottom of the fifth inning. As soon as Lydia took this photograph of me the ticket resellers (scalpers) descended on us like vultures spotting prey.

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The first offered me a bargain basement $25 a ticket for, of course, the best seats in the house. I politely said no then walked away. The second wanted to sell me lower deck seats for $10 each. I said no and walked even further away. He followed me for about twenty yards. After a short whisper deliberation with Lydia, I told him I would buy the tickets only if he walked to the entrance gate with me to confirm their legitimicy.

A few minutes later Lydia and I entered into Wrigley Field for the first time. The tickets gave us a great view along the left field line with some obstructed view only above us.

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A few minutes later Lydia and I entered into Wrigley Field for the first time. The tickets gave us a great view along the left field line with some obstructed view only above us.

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Singing “Take Me Out to the Ballgame” at Wrigley Field

Any baseball fan knows how iconic singing “Take Me Out to the Ballgame” during the seventh-inning stretch is at Wrigley Field, especially with legendary Harry Caray. A great MLB article Famous fans stretch their pipes at Wrigley describes this Cubs tradition. I waited expectantly for the top of the seventh to finish then signaled to Lydia it’s time to sing.

Here’s a video of that memorable moment:

 

Immediately after the song ended we ran for the exits wanting to avoid the rush out of the stadium. On the way out we stopped at the gift shop, took a quick pit stop, and snapped a few more photos.

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The Cubs ended up winning 1-0, with the winning solo home run by Kyle Schwarber hit in the bottom of the sixth inning.

You never really know what adventures life might take you on when you get invited to a conference because you’ve blogged about psoriasis for over ten years. Or you decide to take the train instead of walk after dinner. Or what might happen if you stay on that train for a few stops longer to see a baseball stadium.

On that late April evening in Chicago I crossed another item off my bucket list: taking in a baseball game at Chicago’s Wrigley Field. All made possible because we felt adventurous after eating deep dish pizza.

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 →