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 →

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 →

16 Weeks with Tremfya: The Verdict?

August 9, 2017 Huntington Beach, CA. I took this photo just before starting Tremfya in August in one of my favorite spots in the world.

I started my Tremfya (guselkumab) journey on Monday, August 21, 2017. Sixteen weeks is an important point to evaluate as clinical trials use this time to evaluate new medications. On December 11, after three injections (week 0, 4, 12), I reached that interim endpoint.

The clinical trial data shows that more than 90% of patients showed greater or equal to 75% improvement at 16 weeks. When I took that first injection, I hoped my body would assimilate Tremfya safely, while effectively shutting down the psoriasis inflammation all over my skin.

Below I evaluate my experience with Tremfya at 16 weeks. The following “verdicts” reflect a moment in time, and certainly are not final. As a disclaimer, my observations are from my personal experience only, and should not be construed as making any claims or predictions for anyone else who might try Tremfya.

How well is Tremfya working for me?

Quite well! After a roller coaster few months with tapering off of cyclosporine, atopic dermatitis (eczema) flares, and super stressful stretches of work, I’m amazed at the level of psoriasis clearance. I’m still on a small, small dose of cyclosporine, but no other biologic gave me this much skin clearance working together with even higher doses of cyclosporine.

After a roller coaster few months, I’m amazed at the level of psoriasis clearance with Tremfya.

I have yet to see my dermatologist this month (that is another story altogether trying to get an appointment with him), so I can’t say what percentage improvement I’ve experienced. But my guess is at least the 75% clearance, and probably more.

I promised photos in my last update. The following photos from July, October, and and December don’t lie.

Continue reading →

14 Weeks with Tremfya: What’s Next?

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

24 Weeks with Tremfya: A Pattern Emerges

I found this photo online that reflects how I feel–looking up for answers into the gray building and sky, not knowing what’s the next move.

For much of the last year I looked forward to taking Tremfya (guselkumab) to treat my severe chronic psoriasis. My dermatologist suggested I hold off on the new IL-17A inhibitors until it was FDA approved.

I continued with a combination of topical steroids, Enbrel (etanercept), and Neoral (cyclosporine). That regimen worked fairly well for some years. But it seemed Enbrel lost effectiveness over the years, and cyclosporine’s long-term side effects started to develop. A little over 14 weeks ago I finally started Tremfya.

Now almost three months into the new treatment I am asking a question I hoped not to need to ask: what’s next?

Skin Condition Update

I won’t make any final or definitive evaluation of Tremfya’s effectiveness quite yet. Week 16 is when the study trials report efficacy anyhow. Charts show the medication continuing to work for weeks after, even though the curve flattens. I can say that overall psoriasis is under better control than with Enbrel and higher dose cyclosporine. Continue reading →

Hitting My “Treat to Target” Goals After 6 Months?

I wrote this article for the National Psoriasis Foundation as an update to my Treat to Target experience earlier this year. The editor decided to take excerpts from below as a postscript and republish as An ongoing experiment with Treat to Target.  See the postscript below for a brief week 13 with Tremfya update.

Here is the full article:

Psoriasis treatment for me is a series of starts and stops, and then restarts. In the past, I focused on finding something that effectively calms down the inflammation in my body so I can at least function at my job. When a treatment stopped working, or a new treatment proved unhelpful, I moved on to the next one. I find treatment rarely follows a dependable straight-line path for the foreseeable future.

Earlier this year my approach to treatment changed after I read about the National Psoriasis Foundation’s Medical Board’s “Treat 2 Target” treatment strategy. They established the goal of 1 percent or less psoriasis on the body within three months of treatment. An alternate acceptable goal is to maintain 75 percent improvement of psoriasis skin involvement in three months. These treatment goals inspired me to not accept “good enough” and strive for better results.

Of course, treatment decisions are individual and meant to be worked out with medical providers. Knowing I needed to consider change to more effective medications, I talked to my dermatologist about setting goals at my first appointment of 2017.

When I wrote about my first Treat to Target experience earlier this year, I hoped to reach the treatment targets I set with my dermatologist, Dr. Maverakis within the three or six-month time frame. Unfortunately, circumstances did not work out as I wished. 

Hitting Targets Can Take Time

Many variables came into play as I strived for at least 75 percent psoriasis improvement. First, I ultimately decided not to do the treatment my dermatologist first prescribed for me. He wanted me to try Goeckerman therapy, a combination of coal tar and phototherapy. At first I went along, but over time I became less enthusiastic about the time consuming and messy nature of the treatment. Several poor experiences with phototherapy in the past proved difficult to overcome as well.

The next option we considered, the innovative biologic Tremfya (guselkumab), would not gain FDA approval until summer at the earliest. In the meantime, I asked if I could try a newer systemic medication. While my dermatologist agreed to prescribe it for me, my health insurance provider ultimately denied covering it. Eventually the drug manufacturer agreed to provide it for free after I applied to their patient assistance program. In the end, receiving the medication took almost six weeks.

The next twelve weeks became a roller coaster ride with the new systemic medication. I managed the ups and downs of challenging side effects and waited day after day to see improvement. My dermatologist and I decided to stop it due to lack of response. In fact, my psoriasis seemed worse.

Hitting those targets took much more effort and time than I expected. But setting the goals kept me focused on reaching them however many setbacks I faced.

Months into my Treat to Target experience I felt disappointed and at a loss what to do next. Hitting those targets took much more effort and time than I expected. But setting the goals kept me focused on reaching them however many setbacks I faced.

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Follow my Tremfya journey!

Tremfya (Guselkumab) Week One

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

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New Treatment, Renewed Hope

Around the time my dermatologist and I decided to stop the systemic medication, the FDA approved Tremfya. Dr. M. asked me to come to the clinic the next day at lunch time so he could see me without an appointment. A few weeks later I became the first patient to use the new biologic medication in the University of California, Davis Health System.

Once again, I feel hopeful that I can reach the treatment targets Dr. Maverakis and I set earlier in the year.  A few weeks into treatment psoriasis lesions on my arms and legs started to slowly fade, becoming flatter and less scaly. Although I experienced new outbreak in the next couple weeks, those lesions began to disappear soon after. I’m optimistic that clear skin is possible in a couple more months.

Once again, I feel hopeful that I can reach the treatment targets Dr. Maverakis and I set earlier in the year.

The path to clearer skin, however, might take a turn for the worse at the end of the year. I’m losing my dermatologist as his medical group will no longer participate in my health insurance provider’s network. I want my new healthcare providers to continue the goals and treatment I started this year, but I have no guarantees that they will.

I’m not too worried, though, about what comes next. My experience with Treat to Target so far tells me that obstacles and challenges to reach treatment goals come in many different forms and ways. Keeping the goals in mind, while adopting a flexible attitude, gives me the courage and persistence to overcome them one by one.

Postscript: At week 13 on Tremfya I’m seeing a bit more psoriasis breaking out all over, but especially on my trunk and stomach. I am remain optimistic that in the next few weeeks the injection I took last week will start working!

12 Weeks with Tremfya: The Third Injection

I took my third dose of Tremfya on late Sunday night. Each box contains one dose.

The last two weeks I waited impatiently for this past Monday. I recently shared how my psoriasis began breaking out before week ten with Tremfya (guselkumab). My dermatologist warned me that sometime before the next injection I might experience a flare as the medicine worked itself out of my body.

Tapering cyclosporine down to a small dose three times a week further increased the odds I would flare. When Monday came I hoped the Tremfya (guselkumab) injection would reverse the reignited psoriasis inflammation. But first I would enjoy, and endure, a long weekend of exciting work.

A Busy Weekend Ends with a Tremfya Injection

This past weekend’s stressful events no doubt contributed to worsening skin conditions. On Friday, Lori and I drove out to Sacramento in the afternoon for a wedding rehearsal. As the officiating minister, I arrived at the church early to get organized. Unfortunately, the bride encountered traffic delays. I can start a wedding rehearsal with almost anyone missing, except the bride or groom. The rehearsal finally started about an hour late.

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Tapering cyclosporine down to a small dose three times a week further increased the odds I would flare. When Monday came I hoped the Tremfya (guselkumab) injection would reverse the reignited inflammation.

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Lori and I did enjoy a wonderful Chinese style banquet dinner after rehearsal, although the later ending to the evening left me exhausted.

IMG_9557

The bride’s father gives away his daughter to an eagerly awaiting groom. The Saturday wedding ceremony in a Sacramento area church became the centerpiece of an exciting, but long, weekend.

On Saturday, I officiated the almost one-hour ceremony. My ceremonies tend to run shorter, but Chinese translation added about twenty minutes to the overall lenght. The longer ceremony added to the stress of the day. An evening reception fourty-five minutes  away left us far from home. That night I worked on the Sunday message until two in the morning.

On about four plus hours of sleep I stumbled onto the stage at church to speak. At first, I could not form sentences properly. Thankfully, my coffee kicked in so I could work through my points. Later in the morning I baptized two students in our new sanctuary baptistery.

IMG_1941

Baptism at Davis Chinese Christian Church. I baptized two students on Sunday in the late morning service after speaking in the early morning service.

 

After a lunch meeting I looked forward to a long nap and evening watching sports. Unfortunately, one of our youth at church landed in the hospital. Lori and I drove back out to Sacramento to visit.

Around midnight I decided to inject the third dose of Tremfya. With the first two injections I felt some dizziness and fatigue, so I decided to take it before bed this time. I let it warm up for about 15 minutes then stared at it for a few more. Something that costs upwards of ten thousand dollars needs to be treated with care and appreciation.

The injection went in quickly and painlessly. I did feel that a bit of dizziness as expected, but slept it off.

[As a reminder, the first dose of Tremfya is on week 0, with a loading dose following on week 4. The next dose is on week 12, with subsequent doses injected every eight weeks.]

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Follow my Tremfya journey!

Tremfya (Guselkumab) Week One

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

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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Saying Goodbye to My Dermatologist

The Friday before I said goodbye to my dermatologist.

My new provider network approved this last clinic visit to U.C. Davis Health before the calendar turned over to 2018. I first enjoyed the visit with the dermatology resident, Kevin. I was impressed he remembered me from a local National Psoriasis Foundation event. I appreciated how he refilled ALL my prescriptions and gave me the maximum number of refills for good measure.

When Dr. Maverakis finally came in I perked up. Our collaboration grew over the past four years to where we could catch-up, discuss my advocacy and his research, and jump right into my treatments during a typical clinic visit. We talked as if I would see him again. When I reminded him it would be my last visit he said, “I know.”

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I sadly shook Dr. Maverakis’s hand, knowing that I would no doubt talk to him again, but just not at the dermatology clinic.

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We decided that I would continue taking one pill of cyclosporine three times a week. If my psoriasis improved enough after the third Tremfya injection I could stop. If not, I could take that pulse dose of cyclosporine for a couple weeks. Other options to add to Tremfya in combination therapy included phototherapy or wet wrapping periodically.

I sadly shook Dr. Maverakis’s hand, knowing that I would no doubt talk to him again, but just not at dermatology clinic.

Verse of the Week

Romans 5:3-5 The Outcome of Suffering

When I spent six weeks at the psoriasis daycare clinic the summer after high school graduation, many verses helped me endure. This passage from Romans became a seminal passage for my understanding how God could allow me to have severe psoriasis.

Over the years the Apostle Paul’s thoughts rang truer and truer as I sensed God desiring to build up my character and strength through challenges such as psoriasis. Clinging to a secure hope helped me through those lowest of valleys.

Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

 

 

10 Weeks with Tremfya: One Step Back

Two steps forward, and one step back. This saying aptly describes how I feel about my experience with Tremfya (guselkumab) after ten weeks. Overall I see progress. But during these seventy days I can point to a few setbacks.

When I updated two weeks ago I felt great—positive that Tremfya could take on my psoriasis single-handedly. I continued tapering cyclosporine to three 100mg pills a week (instead of my typical three pills per day). Even the atopic dermatitis stayed mostly under control.

But over the past week the psoriasis took a clear step backwards. When I looked at my skin in a full length mirror I could see an archipelago of bumps that recently emerged. When I put lotion on I could feel the hot spots breaking out on my back, legs, and arms.

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Over the past week the psoriasis took a clear step backwards. When I looked at my skin in a full length mirror I could see an archipelago of bumps that recently emerged.

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I felt similar setbacks in the first few weeks, but now it’s later in the treatment cycle. Ten weeks is not the endpoint to improvement with Tremfya, though I didn’t expect to take one step back at this point.

One Part of the Solution

As those lesions grew in both size and number, I became more and more depressed. Setbacks never feel good. I hate hearing how the downward trend is only a pause in a glorious future. As a person who has experienced severe flares, I dwell on the down trajectory becoming an unstoppable spiral downward.

What broke me out of this negative thought cycle? Accepting that Tremfya might only be part of the solution, not a single solution. Monotherapy is a dream I stubbornly hold onto—taking one medication that suppresses psoriasis by itself. No more phototherapy. No more pills, ointments, or steroids. One injection every eight weeks, and that’s it. The recent outbreak also broke me out this line of thinking.

Tremfya can hit clean-up or be the starting pitcher, to use a baseball analogy. But one medication, however strong or targeted, probably will not adequately do all the work. Teamwork means combination therapy—using multiple approaches, and even lifestyle changes, to face down the enemy.

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Follow my Tremfya journey

Tremfya (Guselkumab) Week One

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!

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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Final Dermatology Appointment

This coming Friday is my last with Dr. Maverakis at U.C. Davis Health, Dermatology. My insurance provider approved a single visit referral for the remainder of 2017. Since my next appointment falls on the first week on November, that one will be my last.

I will miss the collaboration and rapport built up with Dr. Maverakis. With more time I would want to continue experimenting with the right combination to treat psoriasis and atopic dermatitis. The ideas we generate at appointments come to fruition weeks or months later. This time, however, marks the end. No more tomorrows to return to see if we should continue a therapy, start a new one, or add one to the arsenal.

It took several months accept this change. The blow will soften if the new dermatologist works with me well. Otherwise I would consider more radical changes such as switching health insurance companies through a change in job status, or entering the Marketplace. No good options there, I’m afraid, but health comes first.

Verse of the Week

Finding Joy in Suffering (James 1:2-4)

One of the most impactful passages on how I view living with severe psoriasis comes from James. This passage came to me during a six-week stint at a psoriasis treatment center in Palo Alto, CA the summer after I graduated from high school.

Almost thirty years later I see the wisdom in allowing life’s circumstances, even the unpleasant ones, to positively influence my heart and character. Nothing’s wasted, I like to say.

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.Let perseverance finish its work so that you may be mature and complete, not lacking anything.