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

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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.

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.

The Frustrating Road: Appealing the Insurance Denial

As I wrote in Insurance Request Denied for Otezla, I heard first from my dermatologist of the denial. The next day I received a letter detailing the denial. The crux of their argument for denial is that I’m already taking Enbrel (etanercept), a biologic, and no studies exist to show the efficacy of taking Enbrel and Otezla (apremilast).

I honestly didn’t expect too many studies of people taking Enbrel and Otezla. Otezla is only FDA approved recently. I understand many people with psoriasis would not need to take two high costing medications to treat their condition. Unfortunately, I am that person who needs a combination of therapies to even keep me at the high-level of moderate to low-level of severe. Forget about clearance or near-clearance.

Last week I finally conjured up the courage to call my insurance provider about the Otezla denial. Right away I knew why I procrastinated.

The call did not get off to a good start. She asked me my identifying information, which I gave all except my state. I figured this is a small HMO that is local, so California would be assumed. She told me twice that it was needed to identify me in their records. I felt annoyed already.

I learned quickly that my provider already filed an appeal on my behalf, so the call was essentially useless. I told her that I still wanted my perspective to be heard by the insurance medical reviewer. She told me that my perspective didn’t matter, only whether or not the medications prescribed are medically necessary.

More frustration. Some angry words exchanged. Then silent typing for five minutes.

I felt disoriented during the silence. Was she documenting my upset? Would I be denied insurance later if I pushed too hard for this medication? She assured me that wouldn’t be the case, that she only needed to document what happened on the call.

My condition, I reasoned, needs two medications to overlap. If the old one is stopped too quickly, the new one might not be strong enough to suppress the inevitable flare. I hope to only be on one medication eventually, but that takes time. More typing and silence.

I trust she took down what I wrote for the medical reviewer. But why couldn’t I share my experience and thoughts of my own medical care in the first place? I never did get a straight answer on that question.

Now it’s time to wait some more, up to 30 days. I’m starting to not even want to try this medication if it’s so much trouble!