5 Weeks with Tremfya: Biggest Fear?

I visited my dermatologist, Dr. M., at the UC Davis Health Dermatology clinic in Sacramento. This visit came about 4.5 weeks after starting Tremfya.

I’m a dreamer. Psoriasis treatments, however, dash my hopes more times I care to remember. After five weeks on the new biologic medication Tremfya (guselkumab) do I dare to dream that it just might clear my skin of nasty psoriasis lesions?

On Friday, after my second dose of Tremfya, I visited my dermatologist for the first time since starting the new treatment.

My Biggest Fear

I looked forward to the dermatologists’ assessment of my skin condition, hoping they would say it’s starting to work. First, the resident entered for the initial consult. He looked friendly and willing to listen to my travails. He had no choice anyhow.

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Ten years later I have the same fear: Tremfya will clear my psoriasis, while eczema takes its place.

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I told him my biggest fear is how clearing my psoriasis could lead to worsening eczema. That’s what happened when I took Humira (adalimumab) some years ago. Here was my assessment back in 2008:

My psoriasis is doing reasonably well. The sores on my palms, scalp and feet have worsened but not to the point of great discomfort. Those nasty, stubborn sores on my flanks and back have even become less red and inflamed. My legs and arms have more psoriasis overall, but the plaques do not flake much and the color is pink not red.

The rash is still the squeaky wheel that gets most of the attention. I focus on it so much that I do not notice how well the psoriasis is doing. For the unbearable itch of the rash I still try to take an antihistamine every night. While it does help me get to sleep, I still have my difficult itchy nights wondering when it will go away.

Ten years later I have the same fear: Tremfya will clear my psoriasis, while eczema takes its place. I told the dermatology resident about the rashes on my scalp and upper back, spreading to my legs and arms. Eczema did emerge on my skin, but why? I can’t blame Tremfya yet since I periodically endure eczema flares in general. I hope this one is not from taking its place.

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Follow my Tremfya journey:

Tremfya (Guselkumab) Week One

3 Weeks with Tremfya: The Waiting Game

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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After I shared my fear, the resident explained why clearing psoriasis or eczema tends to exacerbate the other. I’m not a cellular immunologist, so he needed to explain the process as simply as possible. A T-cell needs a pathway to go, and if it’s blocked going one way, it will go the other way, causing one kind of inflammation or another. I thought of a channel of water hitting a diverter directing the stream left or right. With a laser like focused treatment like Tremfya, however, it’s possible I would have less inflammation with eczema.

Less eczema would be wonderful.

Psoriasis Assessment

Dr. M came in a few minutes later. I excitedly showed him my arms, lower legs, and other areas that show improvement. He did say the psoriasis improved, but it’s still too early to assess Tremfya’s assessment. He reminded me that charts show peak efficacy around 12-14 weeks. I have a long way to go with Tremfya, while needing to taper off cyclosporine and manage the eczema outbreak.

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Taken 9/21/17 after 4 weeks on Tremfya. Definite improvement from before, but a ways to go yet.

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Taken 7/18/17 entering my 3rd month on Otezla. Yikes.

Rashes on my upper back convinced him to prescribe wet-wrap therapy (using wet clothing over low to medium strength topical steroid) while waiting on Tremfya. The next day I took the afternoon off for a four-hour scalp treatment and a three-hour session in wet pajamas. At least I could work on my Sunday message for church while passing the time.

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Dr. M did say the psoriasis improved, but it’s still too early to assess Tremfya’s effectiveness.

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Next Visit in Six Weeks

I made an appointment six weeks later hoping I wouldn’t need to contact him beforehand. By then we could add treatments such as phototherapy, pulse cyclosporine doses, and more wet wraps as needed. I might even get a new home phototherapy unit!

I left feeling a bit less fearful knowing a plan’s in place if my eczema breaks out. I’m feeling ever more hopeful that Tremfya will clear the psoriasis. I’m looking forward to what the next few weeks bring.

 

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Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. 

(2 Corinthians 1:3-4)

 

The Waiting is the Hardest Part: A Reflection on Psoriasis Treatments

About five years ago I wrote about starting a new treatment, Stelara, in The Itch to Beat Psoriasis. I wrote about waiting in a similar fashion last week, also after three weeks of treatment–this time on Tremfya (guselkumab). Yesterday I took my second Tremfya injection, ever hopeful for a good outcome.

I especially recall the story about the July 4th fireworks blowing up after some people waiting for hours. I waited 6 months for Stelara to calm my psoriasis, but to no avail. We both did not get what we waited for. The article helps remind me there are no guarantees with treatments, and that waiting can be a valuable learning process–however painful.

Here is a lightly edited version of that article. Continue reading →

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!

 

Insurance Request Denied for Otezla

Today I found out that insurance denied my dermatologist’s prescription for Otezla (apremilast). With so many days passing before hearing I assumed the scrip ran into issues. So, I messaged my doctor to find out what happened over the past ten days.  The dermatology office will appeal the denial, which can take up to 30 days–though I’m told that most likely we will hear back earlier.

How do I feel about the insurance denial? I thought I might feel upset and angry, but I mostly shrugged it off. This insurance company, at least the prescription medication provider, is no doubt accomplishing their goal of wearing me down. They are already in my head. As soon as I received the prescription my first thought turned to whether insurance would approve it. I’m saddened that I would think that first.

Besides indifferent and somewhat sad, I feel mostly tired. For a long time, I’ve preached having a good working partnership with health care providers. I practice what I preach. I can talk to my dermatologist just about anytime about anything. We work closely together to decide on my treatment plan. That’s now not the problem.

How do I have a good relationship with the pharmacy benefits company my insurance contracts?

These issues really are new to me the past few years. From the time of my diagnosis until I took this new job in 2014. I was with Kaiser Permanente. I didn’t deal with insurance issues directly—it seemed if the doctor ordered something, I wouldn’t question if I would get it. Phototherapy, biologics, pills, and procedures were all covered.

I’m not looking forward to the next few days. It feels like each time I call I talk to a different person. All the same, I’m building up the courage to make phone calls to the insurance company this week. When they wanted to deny my Enbrel twice a week—claiming a once a week step down protocol that didn’t work for me—I pushed back hard. I overturned that denial with persistence, clear reasoning, and a calm approach.

Praying that I can keep that same calm, figure out what’s going on, and help the process along. I don’t have to have this exact medication. But I do need to feel some security and confidence that I can reasonably have access to what my doctor and I think are best for my psoriasis and health.