Author Archives: Howard H Chang

psoriasis, Psoriasis Treatments

Tremfya (Guselkumab) Week One

One week ago, I started taking Tremfya (guselkumab) for my psoriasis. The journey to taking that injection started months ago when I talked to my dermatologist about it. I then learned a lot more about its efficacy and safety at the American Academy of Dermatology meeting in Orlando in March.

I’m a bit stunned that I’ve already taken my first dose.

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Follow my Tremfya journey

3 Weeks with Tremfya: The Waiting Game

5 Weeks with Tremfya: Biggest Fear?

6 Weeks with Tremfya: Redefining Expectations

8 Weeks with Tremfya: It’s Working!

10 Weeks with Tremfya: One Step Back

12 Weeks with Tremfya: The Third Injection

14 Weeks with Tremfya: What’s Next?

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 Question/Answer Edition

42 Weeks with Tremfya: Coping with a Skin Flare

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Tremfya Approvals

Tremfya received FDA approval in mid-July. I made a drop-in over lunch appointment with my dermatologist to get my prescription two weeks after. He prescribed it to me, but nothing happened for at least a week. I figured insurance held it up again, but turned out the medication hadn’t entered the pharmacy’s computer system.

After another two weeks passed I received a call from the UC Davis Health specialty pharmacy. I couldn’t believe insurance approved my taking Tremfya! They would ship it in a cooler pack on a Friday. I made an appointment the next Monday with the RN at the UC Davis Dermatology clinic to get training before injecting the first dose.

Pharmacist Counseling

I appreciated the pharmacist from the specialty pharmacy going over all the pertinent details and preparing me for what to expect. Tremfya would be my first new biologic for a few years as I settled in with Enbrel (etanercept) even though it wasn’t as effective as I wanted.

First, she told me to continue taking cyclosporine until I saw my dermatologist next. Enbrel I would stop on the Thursday before the first dose.

Tremfya is injected with a pre-filled syringe with about 1 ml of fluid and a small half inch needle for the 100mg dose. I thought it would come with an injection pen like Enbrel, but not so. I have quite a bit experience with syringes from Enbrel pre-injection pen days. The dosing schedule is week zero, week four, then every eight weeks thereafter.

Next, I learned of some the potential side effects of Tremfya, such as headache, upper respiratory infection/colds, and injection site reactions. I felt relieved to know that patients generally tolerated the medication well, with no black box warnings on the insert.

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As scheduled the Tremfya arrived in a box, which was in a box with a cooler in it. My daughter signed for the delivery. The label said that one dose cost $9995. Thank God for insurance, however much I might complain about them.

First Tremfya Dose

As Monday approached the excitement and anxiety for the first injection ramped up. My wife drove me to the dermatology clinic about thirty minutes from home in Sacramento. The appointment coincided with the solar eclipse, which I enjoyed through a hole in cereal box as we drove east.

I couldn’t sit still as we waited for the nurse to call me back. Questions raced through my mind: Would Tremfya work for me? Would I have an adverse reaction to it? Would the needle hurt going in? Would the syringe be difficult to use?

The nurse finally called me to a room where we set up the injection. She had a Tremfya training syringe ready for me to practice first without a needle. In the meantime, we allowed the medication to warm up to room temperature to minimize any pain I might experience from the injection.

Then the nurse taught me how to swirl the alcohol wipe from the inside out. She told me to inject in my thigh, but I felt more comfortable injecting in my stomach. She instructed me to sterilize a larger area so I wouldn’t worry about finding the exact site on my stomach.

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I practiced with an empty Tremfya syringe with no needle before injecting the real thing.

The springs on the syringe felt different than the Enbrel where I needed to pull the medication into the syringe and push out bubbles. I pinched a portion of my stomach then injected it smoothly in.  I pushed down the plunger slowly as she counted down from ten—twice. Once I finished the injection the needle sprung back as the plunger locked in place.

No pain. No blood. Easy. It took less than a minute for that first dose to get in my system just under my skin (subcutaneously).

For the next hour, I sat in the surgical dermatology waiting room as the nurse checked on me every fifteen minutes. I felt some light headedness, headache, and blurry vision—not sure if the medication, the anxiety of the buildup to the injection, or lack of food ultimately caused me to feel that way.

One Week After Taking Tremfya

During the next week, I checked my skin nervously to look for any changes. After some research, and talking to my doctor, I learned that I probably would not see any good response with my psoriasis for at least a few weeks with response rates starting to plateau around ten weeks (though still increasing for some weeks after).

Through more reading, I did learn that the half-life of Tremfya is about 15-18 days, and that the peak concentration would be about 5.5 days. I also found a paper in the New England Journal of Medicine on phase 2 trial data with a chart showing the response rate of those in the trial. The response rate of the phase 3 trials I found soon after looked closely aligned to the phase 2 trials.

During the week, I did feel a bit more tired, and possibly catching a cold with a slight sore throat. But I can’t say for certain it is the medication causing these symptoms. So far, the eczema rashes I fear emerging as they did with a previous biologic haven’t. Knock on wood. The immune system is so complex.

My next injection is in three weeks. I’m looking forward to hopefully sharing good news about my experience with guselkumab.

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psoriasis, Psoriasis Treatments

Finding the Right Moisturizer for Psoriasis & Eczema

[This article originally posted on The Itch to Beat Psoriasis, Everyday Health on July 7, 2017.  In the article I did not mention any products. Here I’ll say that the moisturizers I use currently are CereVe Moisturizing Cream, Cetaphil Moisturizing Cream, Eucerin Creme, and Aquaphor Ointment. My use is not a product endorsement, but could be ideas to get you started if you’re looking to try something new.] 

I didn’t grasp the importance of using moisturizers on my dry skin until my mid-thirties. Back then I broke all the rules. I used my lotions and creams intermittently, not routinely. I took two showers a day, which I later learned was stripping my skin of natural oils. At every clinic appointment, my dermatologist noted the parched, dry desert that was my skin. I ignored his pleas for me to moisturize my skin.

Then I endured the worst stretch of skin health in my life. Psoriasis covered more than 95 percent of my body, and I was overwhelmed by feelings of depression. My dermatologist referred me to the Psoriasis Treatment Center at the University of California in San Francisco.

One nurse told me that their patients moisturize every two hours. I just nodded my head in agreement, not mentioning how my lotions and creams sit idle most days. Even though I didn’t end up receiving treatment there, I learned a valuable lesson that stays with me to this day: Moisturize your skin regularly.

Why Moisturize?

Since I have both psoriasis and eczema, I have double the reason to moisturize my skin.

On its website, the National Psoriasis Foundation (NPF) states that “keeping the skin lubricated on a daily basis is an important part of psoriasis care because it reduces redness and itching and helps the skin heal.”

Vivian Shi, MD, assistant professor of dermatology and director of the Eczema and Skin Barrier Clinic at The University of Arizona in Tuscon, has written that moisturizers work by “directly hydrating the skin,” and “bolstering the skin barrier to prevent the skin from losing water.”

I first met Dr. Shi when she was a resident at the University of California in Davis dermatology clinic in Sacramento, and I came to know her work better when I volunteered for an eczema study she conducted. I enjoyed catching up with her over the phone recently about skin moisturizers. On the call, she reinforced the importance of finding an effective moisturizer, as well as adhering to a skin moisturizing plan.

Narrowing Your Search

I asked Shi what was the right moisturizer to use on my skin. “Find the one that you will use,” she says. “At the end of the day, you have to pick one that you will use.” She cautioned me to avoid parabens, dyes, fragrances, and other allergens since I have sensitive skin.

Skin-care products dominate entire stores shelves. so how do you narrow your search for a moisturizer? One way is to look for stamps of approval from organizations such as the National Eczema Association (NEA). I also read articles like the NPF’s blog post, 10 Must-Have Lotions for Under $10, to get ideas. Physicians will often provide free samples to try at home, and I also enjoy sharing moisturizer and treatment ideas with friends and acquaintances.

Part of searching for a moisturizer is learning more about them. For example, Shi’s article taught me the difference between “fragrance-free” (no substances are used to impart an odor) and “unscented” (the product may have a fragrance that’s masked by another substance). She recommends fragrance-free products.

What about the difference between ointment, cream, and lotion? Ointments are the thickest moisturizers and do a great job of preventing water loss. Creams are less greasy than ointments, as they mix greases with a liquid, such as water. But according to the NEA, creams may “contain stabilizers and preservatives to prevent separation of their main ingredients, and these additives can cause skin irritation or even allergic reactions for some people.” Shi notes that lotions contain more liquid or water than grease. Since this liquid evaporates quickly, lotions generally don’t moisturize dry skin as well as ointments and creams.

I’ve used many ointments and creams over the years. Personally, I don’t mind a moisturizer that’s greasier, but I don’t like the feel of something like pure petroleum jelly. I tolerate thicker creams best. Cost and availability are also considerations. By weighing my needs and preferences, I’ve settled on products that I will use routinely.

Developing a Routine

Finding the right moisturizer is only half the battle. As Shi says, “the moisturizer is only good when applied on the skin.” I can certainly relate when she says that about 50 percent of people forget their doctor’s moisturizing directions as soon as they leave the office.

Over the last decade, I’ve refined a routine that works for my skin and lifestyle — a process that begins with a discussion with my doctor about my skin needs. I set aside time to moisturize at least twice a day. After I shower at night, I apply moisturizing cream within minutes of patting my skin dry. Then I apply topical prescription medication on affected skin lesions. When the weather is dry, I apply another layer of moisturizer after the topical medication.

I have the same routine in the morning, but without the shower. And keeping moisturizers in my backpack and at the office gives me the opportunity to moisturize outside of my two regular times if I feel the need.

Your routine will no doubt vary from mine. Some people, for example, set alarms on their phones to remind them to moisturize. Whatever you decide, stick to a routine that works. If you need to, modify your routine so that the moisturizers you’ve carefully chosen and paid for don’t sit idly on the shelf.

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psoriasis

My Two Worlds

The National Psoriasis Foundation’s Volunteer Conference is held in Chicago this year. The first time I visited Chicago I went to Millenium Park where I took pictures of the Cloud Gate sculpture, or popularly known as ‘The Bean.’

This weekend I’m in Chicago for the National Psoriasis Foundation’s Volunteer Conference. On my last day before heading out to the conference, my colleague at church told me to have a nice vacation. I began to tell him that it would not be much of a vacation, but I stopped myself not wanting to explain my conference schedule to him.

I largely live in two worlds: one as a pastor/minister at a local church in a college town, and the other as a patient advocate/blogger primarily with psoriasis advocacy. The two worlds do not overlap much, but they do inform each other.

My Church World

As a minister for almost twenty years I primarily oversee a congregation of over one hundred in an ethnically Chinese church. My group consists mostly of second generation Asian Americans, though they run the spectrum from more culturally Chinese to more culturally westernized. Some, like my wife, are not Chinese but adapt well to the Asian setting.

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On Good Friday I spoke to 250 gathered in our Davis, California church. The Mandarin Chinese translator, Shirley, works with me often when I speak in a bilingual setting.

The three pastors of the church, together with four non-pastor leaders (called elders) oversee the direction and care of the church. My training includes a Master of Divinity and a Doctor of Ministry, which I earned last year. I am also an ordained pastor and elder of the church. So people could call me “Rev. Dr. Pastor Elder,” although most call me “Pastor Howard.”

In this church world, I advise and work with volunteers in all church functions. I do quite a bit of counseling, mentoring, speaking, hosting/visiting, teaching, and team building. I officiate weddings, funerals, baptisms, child dedications, and communion services.  It’s a full-time position and then some.

The church sits a block north of the University of California, Davis campus. My wife and I met at UC Davis as undergraduates, so it’s a homecoming of sorts for us when we moved back from Los Angeles in 2014. I enjoy the relative quiet of the small suburban, agriculturally based area of California’s Central Valley. With the university nearby we spend a lot of time with students and faculty/staff.

My Patient Advocacy World

My world as a psoriasis patient advocate started early and developed late. I learned to advocate for myself as a child, teen, and student with psoriasis. My parents, immigrants who worked day and night to provide for the family, left much for me to manage myself. As early as first grade I rode my bike to school and back.

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Novartis sponsored Natalie Fletcher to body paint three patient advocates to raise psoriasis awareness. She painted three doves on my back to represent peace that comes from faith.

Around that time, I received a psoriasis diagnosis. I couldn’t ride my bike to phototherapy or doctor appointments, but I did call the pharmacy for medication refills and applied medications myself. If I needed anything I learned to speak up, make a call, or get it myself.

Self-advocacy led me to speak up about my psoriasis, despite the seemingly constant bullying, teasing, and misunderstanding associated with a skin disease. It helped me to tell my story. I found more supporters than detractors, which continued to encourage me on the path of sharing openly and often about psoriasis.

The next step to begin blogging about psoriasis made sense in my mid-thirties. I answered the call to blog for an online health website called HealthTalk. Their psoriasis content included a couple patient blogs, webcasts, and other articles. I appreciated the site enough to ask if I could write for them.

The editor wrote back to tell me she did not want me to proselytize or write content too religiously focused or sourced. She liked my writing samples enough to take a chance on me. I learned quickly, though, that my two worlds would need to stay separate for a while yet. That blog on HealthTalk turned into The Itch to Beat Psoriasis on Everyday Health. I began to coordinate some of my work with the National Psoriasis Foundation at that time too.

HealtheVoices, the first of its kind conference for online health advocates, led me into a new phase of advocacy. I met other health advocates for the first time, including several psoriasis patient advocates. With psoriasis research and new medications coming online, the advocacy space opened to join blogger groups, and partner with health and pharmaceutical companies. [See Links to Blogs/Articles for more of my advocacy work and writing.]

Two Worlds Collide

For years, I didn’t mention my work as a minister, or use my Reverend title, in my psoriasis bios or writing. I wanted to be known as a patient advocate who lives with a severe chronic autoimmune disease first. But more recently I found other advocates sharing about their faith from time to time. When I asked Everyday Health about updating my bio, they welcomed the changes.

When I do head out for conferences I invariably end up talking about my faith or work. Almost every trip someone says, “You are a pastor, right? Can I ask you a question?” I’m ready to serve as a pastoral counselor at any time, even on a psoriasis related trip. Sometimes people ask me about my work as a minister.

At church, I often share about my health journey as an illustration of living authentically by faith in a broken world. I personally pray for strength to persevere, and even seek healing and relief from my conditions. Those at church know when I change medications, take trips for conferences, or organize local psoriasis events for the National Psoriasis Foundation.

They welcome my advocacy work as an extension of my work at the church. I appreciate their support and concern for my health. I’m also careful to use my vacation leave for psoriasis related trips so the church does not bear any undue burden for my advocacy.

In both these worlds I feel empowered to help and serve others, albeit in different arenas. That’s why I chose Inspire, Empower, and Advocate as my three themes for PsoHoward.com. I learned that my two worlds actual are both a significant part of me as an expression of who I am and what I sense my calling to be in this world.

2017 NPF National Volunteer Conference

As I write this I’m on the plane heading to Chicago O’Hare’s airport. Lines of thunderstorms hinder our descent from the west, so the pilot explained our path with take us farther north fist. I’m eager to land, get my ride to the downtown hotel, and settle into my room.

The next two days I’ll sit on a corporate roundtable panel, attend a Psocial Ambassador training session, lead a session for teens with psoriasis, table as a PsoSTRONG Ambassador (for LEO Pharma), and attend a reception and volunteer celebration.

This weekend is about psoriasis, but I’m looking forward to how my other world as a minister might come out in conversations and interactions too.

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psoriasis, Psoriasis Treatments

9 Weeks Done with Otezla. Keep Going?

Note: below includes a picture of the current condition of my psoriasis on my back and arms. 

I’m entering the time when I expect to see more results from Otezla at two months. I started this new-to-me medication on May 15th for my psoriasis, and hopefully eczema. Unfortunately, instead of improving, I feel more and more inflammation on my skin than I have in a long time.

I had a great exchange with my dermatologist about Otezla. His response when I mentioned Otezla in the conversation?

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I’ve known all along it’s not his favorite medication. Still, I’m hoping that it kicks in soon so I don’t have to switch medications again.

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My lower back and upper arms are particularly broken out as I taper off from cyclosporine and enter my 3rd month on Otezla.

Tapering Cyclosporine

I’m not sure how much to temper my expectations since I also started tapering from Neoral (cyclosporine).

Neoral is a strong immunosuppressor. So, I’m not surprised it works so well for both conditions. I wouldn’t say I’m addicted to it, although I do like how much it keeps both psoriasis and eczema under control with relatively few noticable side effects. It’s hard to stop taking it for that reason.

This drug scares a lot of people, rightly so, as it comes with a long list of advserse effects, including kidney damage and hypertension. My body, though. tolerates it well. I’ve taken cyclosporine off and on for some years. The dermatologists allow me to go back on it after breaks partly because my labs come back mostly normal each time and it works for me. I’m sad to see it go.

Red Light, Green Light?

Stopping Otezla is also a difficult decision, but for another reason. What if it’s just days or a couple weeks away from reducing all this inflammation? I suffered the side effects for weeks and only recently do I feel they are not so severe. What if I persevered through all that insomnia, diarrhea, headache, and lost productivity for nothing?

If I don’t start something else soon, though, I could be covered in redness in a matter of weeks. If I do start another new medication, such as guselkumab that was FDA approved days ago, will that one work? How long might it take?

I’m not sure if I should give Otezla the red light or green light–even if only for a few more weeks.

It’s time to message my dermatologist again to see what he thinks I should do next if my condition doesn’t improve soon–although I already know what he thinks of Otezla. 🙄

 

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