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

March 5th finally arrived–injection day. The time came for the fifth dose of Tremfya (guselkumab) twenty-eight weeks after starting this treatment journey with it in August.

To prepare I carefully laid out the syringe, the instruction booklet, information sheet, a cotton ball, and alcohol wipe on my desk. As I waited for the medication to warm up for a few minutes my thoughts began to wander.

Would I take Tremfya if my insurance didn’t pay for the approximately ten thousand dollars per injection?

Is there any chance for even greater improvement as I go into the second half of a year taking it?

Will any long-term side effects eventually pop up if I take Tremfya over a long period?

As I grabbed the syringe I figured the answers are 1) no–it’s way too expensive, 2) probably not–I’ve probably seen what it can do already, and 3) I hope not–and that scares me to these three questions. I submitted to the fact that I can’t know everything I want to know about taking a new medication even after using it for over half a year.

Thankfully, the needle and medication went under my skin with no issues. Not even a tiny drop of blood emerged as the needle pulled out. Now it’s time to wait to see how effective this injection will be for weeks 28 to 36, and would it follow the pattern I’ve observed with the past couple injections.

The Pattern Continues

In 24 Weeks with Tremfya: A Pattern Emerges I discussed a pattern I observed with the eight week between injections. About two weeks before the next injection my psoriasis worsens. Then two weeks after the injection my psoriasis begins to improve again. I most enjoy the four weeks in between.

During the previous eight weeks I did have a nagging respiratory injection that seemed to worsen both my psoriasis and atopic dermatitis. While it’s possible the break out is due to the lingering effects of infection, I also see it as a potential confirmation of the pattern I described.

This picture I took earlier this week shows how my psoriasis broke out some on my lower back and upper arms. Continue reading →

An Almost Disastrous First Dermatology Visit

IMG_8511

The empty lobby at the dermatology clinic at lunch time left me feeling quite anxious after I missed my 11:30 a.m. appointment, which I thought was at 1:30 p.m.

Wednesday morning started out quietly enough. I took the morning to rest as I had to work on my Monday day off. I looked forward to my first dermatology appointment at 1:30 p.m. I drove into town around 12:30 to give myself plenty of time. Then it dawned on me.

My dermatology appointment was at 11:30 a.m., not 1:30 p.m.

After double checking my calendar I decided to drive straight to the clinic. Even though the door was unlocked, I only found an “out to lunch” sign on the counter. A call to the scheduling center confirmed I missed my appointment. I’d waited over two months for this visit. Now I found myself one hour late to it.

The scheduler on the phone told me I could take the next available appointment with the dermatologist on May 8th, or with her colleague on May 2nd. She also gave me the option to stay in the clinic office until the staff returned from lunch. I opted for the latter.

As I waited all I could think about is what a disaster the first visit is turning out to be. Being late meant possibly not seeing the new dermatologist for weeks. One little mistake could mushroom into huge consequences for all my treatments.

As I waited all I could think about is what a disaster the first visit is turning out to be. Being late meant possibly not seeing the new dermatologist for weeks.

Awkward Beginnings

Finally, someone returned to the office. I sheepishly asked if she had started working yet, and shared how I felt embarrassed about missing my 11:30 appointment. The receptionist said it was okay, and took my information down. She then asked me to wait until the medical staff returned.

Dr. C’s medical assistant returned and started looking into my situation. He said they could work me into her schedule, but I needed to wait there for up to two hours. Ironically, I ended up getting a 1:45 p.m. appointment, only 15 minutes later than what I first thought. Around 2:00 p.m. the medical assistant called me into the exam room.

I felt anxious changing to a new medical group and system. Right off I felt awkward when I tried to sit on the exam table and asked for a gown.

“On the first visit the doctor likes you to keep your clothes on and sit in the chair,” the assistant informed me. I thought it sounded like rules for a first date, but went with it.

I felt anxious changing to a new medical group and system. Right off I felt awkward when I tried to sit on the exam table and asked for a gown.

Next, he told me the doctor is using an exam recording device that transmits to the Dominican Republic. It apparently helps with documentation so the doctor doesn’t need to worry about writing notes later. I didn’t want to make a fuss on my first visit and told him it would be fine.

Dr. C. walked in a few minutes later. She told me right away that she didn’t have that much time for the visit since I was being squeezed into her schedule.

Having no time to waste, I quickly dove into all my dermatology concerns assuming she could keep up. Continue reading →

24 Weeks with Tremfya: A Pattern Emerges

Twenty-four weeks ago on Monday, August 21, 2017, I took my first injection of Tremfya (guselkumab) to treat my severe psoriasis. That day I witnessed a solar eclipse as I drove to the dermatology clinic in Sacramento. I recalled the day in grade school (February 26, 1979) when the last total solar eclipse occurred in the Northern Hemisphere. That’s around the time when the first psoriasis lesions emerged on my skin.

Over the course of those almost four decades between total solar eclipses I’ve battled severe psoriasis. Sadly, few treatments helped to effectively relieve the inflammation over those years.

I survived messy and smelly coal tar formulations, phototherapy burns, painful side effects of soriatane/etretinate, liver biopsies with methotrexate, rising blood pressure with cyclosporine, and five biologic mediations with injections. Not to mention the strange diets, supplements (I need write about the snake skin powder), alternative Chinese medications, and other unmentionables I tried to “cure” my psoriasis.

Over the course of those almost four decades between total solar eclipses I’ve battled severe psoriasis. Sadly, few treatments helped relieve the inflammation over those years.

Would Tremfya finally be the treatment to eclipse the nagging psoriasis all over my skin?

High Hopes and Expectations for Tremfya

Going into the clinic for my first injection I felt both excited and nervous. All those hopes and dreams of wanting to find “the one” treatment rested in that syringe full of medical innovation. That’s a lot of pressure and expectation on one treatment.

I knew before long that Tremfya would not be the cure I desired, even though it never promised to be one. By week 6 I began to redefine my expectations:

So, I’m lowering my expectations for Tremfya. I do hope this awesome new medication can beat the lowered expectations.  But if it can’t quite climb to the top of that mountain, I’ll take something less. I’ll take less than clear skin. I’ll accept if it needs something other than cyclosporine, such as phototherapy, or stronger topical treatments, to work more effectively at suppressing psoriasis.

Of course, I still hope it clears my skin in a couple months. But if it doesn’t by week seven or eight, I won’t fret about it not doing its job . . . at least not quite yet.

Going into week 21 I’m not fretting about whether or not Tremfya will work or not. Instead, I’m observing a pattern emerge on how it works with my psoriasis. 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.

—————–

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

—————–

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.

—————–

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.

—————–

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.]

—————–

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

—————–

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.”

—————–

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

—————–

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.