psoriasis

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

On Sunday evening I took the fourth Tremfya (guselkumab) injection out of the refrigerator. As I carefully opened the box the instructions fell out onto the desk. I thought, hey, I know how to inject a syringe subcutaneously, so I don’t need to look at it. But a seed of doubt entered my mind: have I really injected Tremfya correctly?

That question became more urgent as I looked over at the specialty pharmacy receipt. Thank God that my health insurance company pays for this expensive biologic. The receipt shows the cost of one injection at $9,500.65. I joked with my daugher I could just about pay her three-year car lease with one injection. I could pay for a lot of stuff.

I could not afford, though, to mess up this injection.

The First 30 Minutes

What I first noticed about the instructions is how to pronounce “Tremfya.” Next, I wish the cover told me how to say “guselkumab,” but I suppose that is for another day.

Tremfya Instructions Cover

The instructions unfolded in accordian style across my keyboard on my desk. I naturally jumped straight to the first step: “Prepare for your injection.” Basically this step says to take the Tremfya box out of the fridge and let it sit on a flat surface at room temperature for at least 30 minutes.

This is a step I should not be able to mess up. But when I took my first dose the nurse did not let it warm up for as long as instructed. I guess her impatience got the best of her. Or, she didn’t read the instructions. I’m glad I started to, and encourage anyone taking a new mediction to do the same.

Time to Inject Already?

Thirty minutes is plenty of time to scan the rest of the instructions and watch a bit of Netflix. Still, that half hour passed too quickly as I hate injections. Self-injections take that hate to another level. Self-injecting with a syringe, not the hit-a-button pen, takes a bit of skill on top of courage.

I hate injections. Self-injections take that hate to another level. Self-injecting with a syringe, not the hit-a-button pen, takes a bit of skill on top of courage.

After stalling for a few more minutes, I picked my injection site and cleaned it with an alcohol wipe. Then I pinched up a bit of tummy flab. In a “dart-like motion,” I finally inserted the needle at a 45 degree angle into my skin. The needle went in quickly and smoothly, although when it pulled out (it does so automatically when all the liquid is pushed in) a bit of blood welled up on the inject site. Applied pressure with a clean cotton ball stopped that nonsense.

After Injection Reaction

As with the other three injections, I felt a bit light headed after the injection. This time the injection site felt a bit itchy as well. I’ve noticed how my asthma perks up slightly with this medication. So, I took a precautionary puff of rescue inhaler beforehand like I do before exercising. I welcomed the fatigue I feel after the injection as I needed to sleep after a huge day at church.

My other reaction was emotional. Continue reading

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psoriasis

Psoriasis and Living Courageously: Reflections for a New Year

Happy New Year! A new year brings a lot of excitement, possiblities, and trepidations. With anything worth fighting for in life, facing down fears and anxieties takes a measure of courage.

For example, this past spring Lori and I visited the California State Capitol in Sacramento to lobby with the National Psoriasis Foundation for a continuation of care bill. Every time I go to the Capitol building I feel quite anxious. But I’m glad I didn’t let that opportunity pass because of my fears.

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April 2017. At the California State Capitol Building with Lori in front of the Governor’s Office.

I’ll need that same courage in the coming months as changes are coming for me in 2018. I will see a new dermatologist. I plan to start phototherapy again. I’m trying to figure a way to work at church a bit less, and write more. The kids have big transitions coming too with the oldest moving on to university, the middle son graduating from high school, and the youngest moving on to senior year and college applications.

I’ll need that same courage in the coming months as changes are coming for me in 2018. I will see a new dermatologist. I plan to start phototherapy again.

I wrote this blog for Everyday Health about how psoriasis taught me to live courageously. I hope it’s an encouragement to you to face your next life challenge or obstacle with a strength of heart.


Living with a chronic illness like psoriasis takes courage. I learned that lesson as a child with psoriasis. The world is a big place for a 9-year-old. That’s when I started using phototherapy to treat psoriasis.

The closest phototherapy light box at the time happened to be about 30 minutes away at the medical center in Oakland, California. My mom, who didn’t drive on the freeway at the time, overcame her fears to take me to light treatments three times a week.

I didn’t really understand what was happening to me. They told me I needed “light treatment,” but that didn’t mean much to me as a kid. My mom dropped me off at the clinic, then headed out to get me a snack.

A nurse escorted me down a long hall through a warehouse area to the box in the back. I took off most of my clothes and put on strange green goggles. Once the nurse turned on the light, I waited until it clicked off.

Continue reading

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Living with Psoriasis, psoriasis

My Last Dermatology Visit: As Good as It Gets?

I couldn’t believe what I read in a letter dated November 21 from Western Health Advantage (WHA), my health insurance provided. They approved my continuation of care request for one more visit in December.

I’d already said goodbye to Dr. M and his team at the November appointment. With excitement, I called the Dermatology department to book my last dermatology visit at UC Davis Health. “I’m sorry Mr. Chang,” she flatly said, “Dr. Maverakis does not have any open appointments for the rest of the year.”

Getting that Elusive Last Appointment

What? After waiting weeks to hear back from WHA I now faced denial at the dermatology office? “You can call back as many times as you want to check for cancelled appointments,” the receptionist told me. They don’t keep a waiting list, but would be fine if I called ad infinitum.

So, I called back a few days later. No appointments still. Another call revealed that the university holidays on the last two weeks of the month hurt my chances of landing that coveted appointment. Then I called WHA about extending the continuation of care. Let’s just say that 45-minute phone call made me want to call back UC Davis to get an appointment in December.

Finally, the receptionist took pity on me. He said he would write my name and number down and give me any cancellations that arose. Sure enough, within a few hours, I booked a 9:15 a.m. on Friday morning, December 15th. Why couldn’t he do that from the start? Anyhow, I felt grateful to have the appointment no matter how I got it.

With this health care system, I’m guessing this is as good as it gets.

Assessing my Skin Concerns

Dr. M understandably wants me to taper completely off of cyclosporine. Tremfya (guselkumabis the key treatment we looked to replace it. This visit happened to coincide with my 17th week on the new biologic.

Check out the new Treatments Tried section with a list of Tremfya blogs.

How would he assess my psoriasis and eczema after using it for four months?

Continue reading

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wellness

Everyday Health’s State of Women’s Wellness 2017: Lori’s Story

The other day I asked my wife, “Are you satisfied with your overall sense of wellness?” I waited for her response to vote in a Twitter poll from Everyday Health. She paused for a moment to think about it. I realized soon enough that she could not easily gauge her sense of wellness in that quick moment.


EHwomensWellnessLogo

The editor I work with at Everyday Health for The Itch to Beat Psoriasis alerted me that their special report, “State of Women’s Wellness 2017,” would post on December 15th.  The report covers how “American women define and rate their wellness based on factors like stress, illness, relationships, sex, BMI, financial health, and money.”

Through the survey and discussions with experts, they sought answers to the questions, “What’s standing in the way of women’s wellness, health, and happiness? What would it take to enable them to feel empowered and inspired to live their best lives and achieve their highest level of wellness?”

How the women in my midst respond to these questions directly impact me as a son, husband, father, and minister. I live with a wife from Gen X, a Millennial daughter, and an iGen daughter. The report highlights generational differences that affect them all.

What would it take to enable them to feel empowered and inspired to live their best lives and achieve their highest level of wellness?

As a moderately dense, somewhat self-centered male, I needed to listen to these results. I typically make judgments or evaluate others equally without concern for gender differences. I not only wanted to listen to the women behind the survey, I desired to listen to the women in my life as well.

I quickly noticed the top three wellness challenges that women face: 1) 44% Stress about life, 2) 43% Lack of Sleep, and 3) 43% Finding Time for Fitness/Exercise.

I know my wife worries about others, especially me and my health. With three children still at home, two of them teens and one managing mental illness, she has plenty to keep her mind occupied. As the report states, “When respondents were asked if they were likely to put their own needs first, only 24 percent responded that they would.”

I did not want to presume, though, how my wife feels about her state of health and wellness. The report ends with a powerful statement: “we all have powerful stories to tell.”

What follows is my wife Lori’s health and wellness story told in her own words.


Greatest Health Fear: Breast Cancer

Before I share about a wellness challenge and how I overcame it, I want to address a health fear that I struggle with. In the Women’s Wellness 2017 Special Report, there were 5 top fears that women have. One of them is cancer. Starting in my childhood, I’ve lost quite a few family and friends to cancer–the most common for women being breast cancer.

In the Women’s Wellness 2017 Special Report, there were 5 top fears that women have. One of them is cancer.

The most directly impactful personal loss was my mother. She had a particularly aggressive case of breast cancer which metastisized quickly and took her four years after diagnosis. She also had chronic autoimmune disorders throughout her adult life so it was difficult to find a cancer treatment that wouldn’t seriously harm her. It was an agonizing situation that left me without my mother–and my young children without their grandmother–right after Thanksgiving.

It has now been sixteen Thanksgivings and times have changed.

Our awareness of breast cancer has increased. October is Breast Cancer Awareness Month. While I am deeply appreciative of the fundraising and 5Ks that women run for this very worthy cause, at times it can be overwhelming for me to face all the pink ribbons in October. It can serve as a painful reminder that I will have to get through the holidays without my mom. I miss her every year.

However, I want to be prepared in case I find myself facing a similar diagnosis. I recently booked a consultation with a genetic counselor to see if I could carry a genetic risk for breast cancer. After the consultation, I felt that I better understood having a genetic risk versus normal aging and changes in breast tissue.

It is alarming to know that three women in my family faced breast cancer (two of my great-aunts as well as my mom) and only one survived. However, I do not carry a genetic risk. I will keep up with regular breast exams and yearly mammograms trusting that should I face a diagnosis, it will be caught early.

Biggest Wellness Challenge: Rest and Sleep

One wellness challenge that I’ve focused on is getting enough rest and sleep. According to the report, 81% of the women in the survey said they struggle to get a good night’s sleep. When our kids were young–we had three children within six years–it seemed impossible to get a good night’s sleep. Night feedings, children waking up to use the bathroom, having nightmares, our son even was a sleepwalker for a period of time left me with four hours of broken sleep on a good night.

It was frustrating to be woken up from dreamland and when I finally got back to bed, I would toss and turn waiting for another child to wake up. By 5am, I was fed up with trying to get any more sleep. To compensate, I resorted to my old trick during my college days when I was pulling all nighters writing papers: drinking coffee.

It was frustrating to be woken up from dreamland and when I finally got back to bed, I would toss and turn waiting for another child to wake up

At first that seemed to work. But then I noticed that my brain was foggy. It felt difficult to make rather everyday, easy decisions (as in what to cook for dinner) and I would find myself zoning out in the produce aisle while my kids sitting in the grocery cart helped themselves to the apples on display. In my experience, sleep deprivation fed on itself. It became a mental struggle.

I lost faith that I could get a good night’s sleep so I would go to bed with a lot of anxiety about it and with a rather valid concern as to how I would function the next day. Then it just became a pattern. Night after night, time dragged on. I became deeply depressed and in retrospect, I believe sleep deprivation was a key contributing factor.

I Just Need to Breathe

In therapy, we focus a lot on breathing. At first I felt this was not a very bright idea. I mean we just breathe naturally–what’s the big deal? But when I focused in on how I was breathing I noticed that it was rather rapid and shallow. I was even holding my breath.

As I practiced taking slower, deeper breaths I noticed that my whole body would calm down–including my mind. It became more difficult to focus on my anxiety about sleep as I focused on the rhythmic inhale and exhale of my breath.  I would even feel drowsy as I spent 8-10 minutes in a group relaxation session.

As I practiced taking slower, deeper breaths I noticed that my whole body would calm down–including my mind.

If it worked in a group setting, maybe I had a shot at making this work at home. I extended my relaxation session to 20 minutes lying down in bed. I began to have regular success with falling asleep and as the kids grew older, I wasn’t awakened at night quite as much as in the past.

The amount of time I spend sleeping improves my mood, prepares me for the next day, and even helps control my weight. At this time of year, I require more sleep. It can feel limiting not to spend more time with family or engaging in daily activities I enjoy, but I know it’s a good discipline for me that gives me energy and motivation for other areas of my life. The hours that I spend awake are more meaningful and that feels so much better than sleepwalking through life.

 

 

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