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 →

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.

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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.

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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.

6 Weeks with Tremfya: Redefining Expectations

The sunsets here in Northern California’s Central Valley can light up the sky with a myriad of colors. I took this shot while exercising, reminding me how precious moments like these are to not waste–especially as the wait for Tremfya’s ultimate result continues.

When I started taking Tremfya (guselkumab), I carried an unstated goal and expectation: clear skin. I looked at the graphs and incredible data on the effectiveness of Tremfya and just figured I could enjoy life with less and less psoriasis over the course of sixteen weeks.

At six weeks, some forty-two days later, I’m readjusting my expectations.

I know I need to wait another couple of months to see the full effect of Tremfya on my over-active immune system. But so many other factors become involved in how my skin looks than if I take an injection every eight weeks or not. I just hoped that the new injection would strong arm all those other triggers to where they would give up their fight.

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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?

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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They are not giving up so far. The biggest factor appears to be tapering cyclosporine. I knew that psoriasis and eczema would inevitably rebound as in the past. While I enjoyed some relief from psoriasis after a few weeks on Tremfya, over the last couple weeks all kinds of rashes broke out on my scalp, trunk, legs—almost everywhere. The spots that went away a few weeks ago came back as itchy, red, and irritated sores.

Tremfya might still win out in the end, but the process is not the straight line to spotless skin I imagined or hoped.bNow that I’ve come back down to earth, what are my expectations for Tremfya? How do I define success if it’s not clear skin with no complications?

Lowering Expectations

As a graduate student, I carried high expectations for everything. I thought I only needed to say something once then (most) everyone would agree and understand. I figured that if I learned a lesson that I learned it for life with no relapse. I expected my work at church to be as easy as learning in school.

My mentor pulled me aside to gently tell me to lower my expectations for just about everything.  What?! That sounded so wrong to my idealistic brain. But my mentor passed on wisdom that applied to so many aspects of my life since, including psoriasis.

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.

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Of course, I still hope Tremfya 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 . . . yet.

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Raising Awareness

In the meantime, week 6 of Tremfya coincided with the second annual TeamNPF Walk in Sacramento. Last year we registered about 50 people and raised just over five thousand dollars. This year we hit 75 people and seven thousand five hundred raised!

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I’m amazed at how little people know about psoriasis, and the resources available to them. My motivation and encouragement comes from every time someone says that they never met others with psoriasis, or how difficult living with psoriasis can be.

My family came out early in the morning on a Saturday to join the walk and volunteer to lead the walk group. Their support and love means the world to me as I pour so much of my life into inspiring, empowering, and advocating for those impacted by psoriasis.

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Verse of the Week: Isaiah 53:4-5

This verse from Isaiah once haunted me. The suffering servant brought healing to wounds. So why aren’t my wounds of psoriasis gone, I wondered. I came to accept that they are healed, but perhaps not in this lifetime or in the way I might expect.  Now the verse is comfort to me as I put my hope in a future redemption of this body–no matter what happens with Tremfya or any other medication.

Surely he took up our pain
    and bore our suffering,
yet we considered him punished by God,
    stricken by him, and afflicted.
But he was pierced for our transgressions,
    he was crushed for our iniquities;
the punishment that brought us peace was on him,
    and by his wounds we are healed.

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. 🙄

 

Why I Hate Taking a New Medication

A little over a week ago I received the news that I would receive a somewhat new psoriasis medication, apremilast (Otezla), direct from the manufacturer. At first I felt a sense of relief that the battles with insurance over covering it came to an end. Then I faced the prospect of taking the medication. A feeling of dread overcame me.

I say I’ve tried every psoriasis medication there is to try. Of course, that’s not completely true, especially with some obscure ones left untried, and more coming out all the time. Over the past few years I’d given up on trying the new ones since my current treatment worked fine.

But it’s time to take a break from cyclosporine, which has a long list of side effects and an FDA limit of one year of usage at a time. That means a new medication.

New Medicine, Same Old Story

I have the memory of an elephant when it comes to how well I felt and did on various medications. Methotrexate makes me want to vomit (still). Adalimumab (Humira) gave me horrible eczema rashes (though cleared psoriasis). Soriatane made my palms and soles of my feet peel so painfully I bound them to survive. Narrowband UVB (phototherapy) burned my skin to where I couldn’t put on clothes without feeling pain.

Apremilast is on the list of haven’t tried, might want to because it’s for psoriasis after all, but I’ve heard and read the stories of the side effects. The pharmacist who counseled me over the phone also described patients she knows with GI issues (diarrhea, vomiting, nausea), headache, insomnia, weight loss (yes!), and depression (no!). The list is not comprehensive, but certainly some of the side effects a patient on this new medication might experience.

Every new medication I’ve tried has the list of warnings, side effects, and potential drug interactions and concerns. Do I want to take that medicine? Not on your life. But I pop that pill hoping that I might be the exception—works super well for me without side effects.

I can dream, anyhow. I can be the one to prove my doctor wrong, who reluctantly prescribed it to me, adding, “It’s a horrible medication.”

Every new medicine I’ve taken I’ve had that same thought, but so far it’s the same old story. I’m human, other humans who took this drug felt X and Y, and I’m feeling X and Y times two.

Stopping this Medication. . . Just Kidding

Today I had enough. Enough of feeling horrible with headaches, bloating, wheezing, and inability to focus. Enough is enough. I’m going to stop taking it, at least the morning dose so I can be a productive person again.

Then my dermatologist messaged me to try it for two months. I hadn’t told him I would take a break this morning—how did he know? He went on to say that the noted side effects improve over time for many people.

As ten o’clock rolled around, I stared at the pills thinking, maybe, just maybe, the side effects will get better if I keep going. Don’t give up so early, I told myself. I can fight through the pain, I coached myself. With a sense of reckless abandon, I grabbed my morning coffee and gulped it down.

Why Did I Just Do That?

As I rushed off to work to counsel a university student, all I could think was, “Why did I just do that?” I could feel the headache and nausea coming on within the first thirty minutes. I needed a time machine to turn back the clock an hour, and fast. Unfortunately, I couldn’t find it.

When the student arrived, I asked if he could wait for a few minutes. I needed to go to the bathroom. Ugh. At least this bathroom need didn’t happen when I gave a talk last Friday. But what about tonight when I lead a group meeting, or on Sunday when I speak again?

This is no way to live.

 

I do hate taking a new medication for all kinds of reasons, principally side effects. If this medication doesn’t do much to stop my psoriasis, the temptation toward indulging bitterness and rage might emerge stronger than ever. Another reason to hate the new medication—it might be a lot of cost and pain for little effectiveness and gain.

But still I take the new medication, because maybe, just maybe, this is the one to clear my skin with less overall side effects.

I can dream, anyhow.