The Home Phototherapy Unit Arrives!

A few weeks ago the narrowband ultraviolet B light (NUVB) panel finally arrived. My dermatologist and I decided to try home phototherapy after determining that Tremfya (guselkumab) alone would not adequately suppress my psoriasis or address my atopic dermatitis.

I gave up, though, after my health insurance denier provider rejected the initial prescription, the first appeal, and then the appeal to the denial. I know I shouldn’t stop fighting, but I figured I needed to choose my battles wisely. I lost this round and that was that.

A Gift Arrives Via Freight Truck

As the delivery truck pulled up to my driveway I thought about how a couple dozen people generously gave to the GoFundMe campaign started by a parishioner at church. The over four thousand dollars raised allowed me to order, and now take delivery, of a Daavlin Series 7 eight bulb NUVB panel with dosimetry timer.

The over two hundred thirty pound wooden box initially looked like a crudely constructed coffin. But inside contained another tool in the arsenal to combat inflammatory immune responses on my skin. Here I’m holding the protective grills that install over each pair of six foot light bulbs:

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Continue reading →

2nd Dermatology Visit: Waiting and Delaying Treatments

This time I made it on time for my dermatology appointment. After the first visit to my new dermatologist almost turned out a disaster, I made sure to double check the appointment time. Yes, I needed to make it to the clinic on Tuesday at 10:00 a.m. for this second visit.

You’d think that after four decades of seeing doctors I would feel comfortable at clinic appointments. But in those few minutes I spend with the dermatologist decisions will be made about my health that will impact my life for weeks to come.

With a new dermatologist and healthcare provider system I felt intense anxiety for that appointment. My elevated blood pressure told the same story: seeing the doctor is a stressful event for me. Even so, I overcame my anxieties to closely collaborate with Dr. Carroll on what’s next for my skin treatments.

Getting Acquainted

Thankfully, the doctor visit went much better than I expected. At the outset I spent a couple minutes getting acquainted with Dr. Carroll. I first shared my psoriasis column on Everyday Health, The Itch to Beat Psoriasis with her. I also talked about my volunteer work with the National Psoriasis Foundation. Dr. Carroll shared how she studied under a prominent psoriasis researcher and physician and supported the Foundation’s efforts. She explained her philosophy of putting patients first, even if they are late like I was last time.

I thought the exchange helped to break the ice and develop rapport. I hoped that by sharing some of my life with psoriasis she could trust I knew my skin conditions well enough to input on treatment decisions. I also felt more comfortable that, based on her training and experience, she could manage the challenging case that is my psoriasis and atopic dermatitis.

Besides getting to know a new healthcare system and my new dermatologist, I needed to consult with her on a couple issues looming for my health and skin care.

Tremfya Adjustment

I’m convinced now that the pattern I saw emerging with my psoriasis on Tremfya treatment at week 24 continues. The normal dosing schedule for Tremfya is one injection every eight weeks. By week six or so, however, my psoriasis tends to begin to worsen. It takes two or three weeks after the injection to get back to a more controlled state–if at all.

I would like to try taking it every 4 weeks, but that would double the injections to 13 annually. With a cost of ~$10,000 per injection you can do the math. Every 8 weeks is about 6.5 injections per year, with every 6 weeks about 9 injections. Continue reading →

38 Weeks with Tremfya: The Q&A Edition

Cloud Gate (a.k.a The Bean) in Millenium Park, Chicago. I’m clearly thinking about the Questions about Tremfya included in this PsoHoward blog entry.

This past week I joined the HealtheVoices conferencein Chicago for the fourth straight year.  Here’s a description of the conference: “In an effort to connect, support and further empower the online health advocate community, Janssen created HealtheVoices™ – a groundbreaking leadership conference created exclusively for those using social platforms to advocate for themselves and their communities.”

I absolutely love how this conference brings people from forty different chronic disease conditions together to get inspired, connected and empowered. Before the conference started a group of psoriasis advocates joined Janssen to discuss Tremfya (guselkumab). A perfect lead into today’s blog topic.

Tremfya Question/Answer

My psoriasis update is not super exciting. I’m mostly stable, with more psoriasis breaking through than before. I just passed the week 38 mark, about two and a half weeks after taking my sixth injection of Tremfya. I hope to include an unboxing of my new phototherapy light panel that’s slated for delivery at the end of the week. Stay tuned!

In the meantime, I’ve noticed various search terms and questions about Tremfya  that have led readers to PsoHoward.com. Below you can find the top queries and my thoughts on each one as I journey with Tremfya.

[Disclaimer: Please note that I am not a medical doctor, nor do I have the definitive answer on these questions. The responses are from what I’ve experienced so far on Tremfya as a patient, or from talking to healthcare providers and a Janssen representative at the Medical Information and Services group.]

How often do you take Tremfya?

The dosing at first was a bit confusing, but didn’t take too long to figure out. I started with a “loading dose” which consisted of Week 0 as the first injection, then Week 4 as the next dose. After those first two injections I was instructed to take it every 8 weeks (week 12, week 20, week 28, etc.).

I recently asked my dermatologist and Janssen about more frequent dosing, perhaps every four or six weeks. Since the label use is for every eight weeks after the initial loading doses, my doctor will need to submit an exception to insurance. I’m not holding my breath.

Does the Tremfya injection hurt?

The first injection caused me some anxiety as detailed in my first Tremfya blog. in years past I used an injection pen with Enbrel. I would press it on the skin (usually my belly or on my leg) and then push the button. The Tremfya injection uses a syringe with a small needle. The injections do not hurt at all. In fact, I can see the needle go into my skin, but do not really feel much as it goes in.

I did use a syringe previously with Enbrel about a decade ago, which prepared and somewhat trained me for Tremfya. The first Tremfya injection I took at the dermatology clinic with a nurse observing. I’m glad I did as I felt safer in case I had any unusual reaction.

Ask about training for self-injection if you are feeling anxious about it at all.

How long before I see results with Tremfya?

This question is by far the most frequent one asked in searches that led to PsoHoward. It’s the question I had foremost on my mind so I’m not surprised. I hated that my health providers told me to be patient. But that’s the truth about many psoriasis treatments I’ve tried: it takes the time it’s going to take.

It makes sense that response rates depend on the individual, although studies and graphs show the overall trends. I started noticing some improvement on my extremities, lower legs and arms, within a few weeks. But my dermatologist told me to wait a bit longer as the data showed response rates coming later into the ten to twelve week time frame. The pharmacist said the same. Around week 8, I excitedly saw a good response, although improvement continued for a few weeks longer before leveling off.


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!

12 Weeks with Tremfya: The Third Injection

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)


Does my skin itch with Tremfya?

I don’t have a great answer for this question as my skin always itches. However, I can say that my psoriasis does not itch as much as the inflammation lessened overall on my body. A few new spots broke out along the way that felt itchy, but they faded in a couple weeks like the other spots. I do have a comment about my scalp, though. See below.

Will Tremfya clear my scalp psoriasis?

My scalp itches quite a bit with scalp psoriasis. Tremfya data shows good response for scalp psoriasis, but unfortunately not so much for me. Definitely not as bad as without treatment–no large flakes peeling off my scalp–but not as good as I hoped.

See the Tremfya prescribing informationfor more details about scalp psoriasis from Janssen.

Is Tremfya for eczema?

At first I feared Tremfya caused my eczema to worsen, but I never could substantiate any causal relationship between injecting Tremfya and worsening or improving eczema. Either way, it is not indicated for atopic dermatitis at this time, which means I need to find a different way to treat my eczema.

What do I do if my insurance won’t cover Tremfya?

I hate that when I start a discussion with my dermatologist about a new treatment we invariably talk about insurance coverage. I have faced insurance denials in the recent past for Otezla, and also for a home phototherapy unitI thought I might for Tremfya as well. Thankfully, insurance provider approved my taking Tremfya, although it took a few weeks for the system at the specialty pharmacy to get it to me because it was new back last summer.

My dermatologist did tell me at the time, though, that I would get the medication one way or another. At that time the manufacturer Janssen provided the medication for a time for certain individuals who could not receive it through insurance.

I would personally go to Janssen’s CarePath Tremfya website to ask their representatives, or to the National Psoriasis Foundation’s Patient Navigator Center with insurance issues that arise.

Does Tremfya give you high blood pressure?

My blood pressure hasn’t elevated that I can tell since taking Tremfya. The Janssen Medical Information and Services representative said that elevated blood pressure is “not something reported or seen in clinical trials or post marketing data.” Certainly something to talk to your doctor about if you have a concern.

Is it okay to take a dose of Tremfya a week late?

The Janssen representative said that it wasn’t studied that way–taking it later than the regular dosing schedule. She said that if you are late, the risk is for the disease to break through. She added the importance of sticking to the interval period as much as possible.

Can I drink while taking Tremfya?

I happen to not drink alcohol, not for religious reasons, but because it flares my skin conditions. Janssen said there is no specific concern or direct contraindication to drinking alcohol with Tremfya, but ask your doctor.

Do you have any questions about my experience with Tremfya not covered here? Feel free to leave a comment or message me and I’ll be sure to respond to those.

One Way to Bypass Insurance Denials

Today I still do not have a home phototherapy unit. Almost five months ago my doctor prescribed one for me. Sadly, explanations and appeals made no inroads with my health insurance provider. I documented the insurance saga with Western Health Advantage (WHA) in a recent post. In sum, they denied coverage, my dermatologist and I appealed, and they denied the appeal of the denial. Simple.

The next step to procure a home phototherapy unit would need to bypass insurance coverage.

On the Lookout for Used Phototherapy Units

The dermatologist who originally prescribed the phototherapy unit suggests I search on Ebay or Craigslist for a used unit. Although I did not like the idea at first, I dutifully began looking online for deals. Nothing popped up that I felt I could trust. Besides, I still felt too frustrated about not getting the new unit I set my heart on that I searched half-heartedly.

Then a kind soul emailed me that they read my blog and wanted to offer me their used unit. I began to research the unit to see if it would be a good fit. After consulting my dermatologist it looked like it would need new bulbs that might not fit the older unit. I would need to do more investigating. [If you are interested in their unit please notify me.]

I resigned myself to dip into savings or ask my parents for the money needed for new narrowband ultraviolet bulbs (NUVB) for the used unit, or a stripped down new unit with four or six  bulbs. Even so, I still dreamed of the ten bulb unit with a center and side panels that cost around four thousand dollars after tax and shipping.

A “Go Fund Me” Surprise

A couple months back in the midst of processing a FedEx delivered rejection letter I joked with Lori that I would start a Go Fund Me campaign. I’d never started one, and had only heard about it. My upset did lead me to think of ways to purchase the phototherapy unit apart from insurance. But I did not feel comfortable asking others to give toward it. My pride didn’t let me really consider it.

At a dinner recently I shared my frustration regarding the insurance denials with a couple. I knew they cared about my struggles with psoriasis and didn’t mind listening. We enjoyed an evening out talking and catching up about recent life events. In passing, I joked about the Go Fund Me campaign.

That evening I received a surprise email asking me if it would be okay to send a Go Fund Me campaign to people we knew. They took my picture from social media and set it up. I only needed to give them the green light and check the information on the description before launching it.

If someone who cared about my condition wanted to help me raise money for a phototherapy unit I didn’t want to discourage them. They titled the Go Fund Me campaign “Medical Treatment Fundraiser for PH.” (At church they call me “PH” for Pastor Howard.) The gesture really touched my heart:

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So far the campaign has raised over 70% of the cost of the unit my doctor prescribed. I will soon purchase that unit after giving it a little more time.

Encouraging Support

I am still grateful for my health insurance provider. I will not forget the quarter of a million cost to them for my son’s three week hospital stay. Or for covering my biologics and specialist visits. But this situation with the home phototherapy unit taught me that I cannot expect insurance to cover everything I need for my medical care–even though I argue they have an obligation to.

Instead, I’m touched by the love and generosity of those who started the campaign on my behalf and others who reached out to me with words of support. I’m also grateful for the friends, church members, family, and others who gave in the first couple weeks of the campaign. Their gifts small or large encouraged me enormously when I felt down about my state of psoriasis activity and treatment.

I still need phototherapy treatment on top of topical ointments, biologic injections, and small doses of cyclosporine pills. It’s a lot of disease activity to address, and I know I can’t do it alone. The Go Fund Me campaign reminded me that I’m definitely not alone. People are praying for me, willing to support me generously, and care about my well being.

One way to bypass insurance denials for treatment? Have a friend invite a community of friends and family to pray and contribute as they feel led to.

Denied! Insurance rejects appeals for Home Phototherapy

I am getting tired and frustrated with my health insurance provider. Really.

On December 15, 2017 my dermatologist, Dr. Maverakis, prescribed a home narrowband Uphototherapy unit. This unit, costing about five-thousand dollars, would treat both my psoriasis and atopic dermatitis (eczema).

With changing medical providers on January 1, I waited until I could see my new dermatologist. After almost missing the appointment, she agreed to submit the application that Dr. Maverakis started a couple months prior.

Surprise! not too long after I received the response from Western Health Advantage, my church’s health insurance provider.

First Insurance Denial

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Here’s an excerpt from the letter:

“The requested service, Home UV Photo therapy booth is being denied by Western Health Advantage (WHA) because it is currently considered Experimental/Investigational for a diagnosis of Psoriasis/Atopic Neurodermatitis. . . . and not a covered benefit under your health insurance plan.”

I couldn’t believe that WHA called home phototherapy “Experimental/Investigational” when I had used it effectively for many years earlier in life. I felt pessimistic about winning an appeal given how their reasoning, and how onerous the appeal process feels.

I Appeal!

Nonetheless, Dr. Carroll and I both sent appeals to WHA. Below is a copy of my letter, which I certainly thought would change the minds of those making those hard decisions at the insurance company:

Dear WHA,

I am writing with regard to a denial letter I received dated February 23, 2018 for a Home UV Photo Therapy unit. I would like to appeal the denial of my dermatologist’s request for this unit to treat my psoriasis and atopic dermatitis.

With the careful supervision of my dermatologists, I have successfully and effectively used phototherapy at home for my skin conditions for many years. Starting in 1981 my father and I built a box with a design and prescription from UCSF Dermatology. I used that UVB unit design off and on for over 25 years until I moved back to California in 2006.  Thereafter I began using cyclosporine, which helped greatly. Now I need to stop using cyclosporine.

I have also utilized phototherapy at the clinic at various times over the past forty years, but do not feel at this time I can go to Sacramento from the Davis/Woodland area three times a week due to my work schedule demands and family needs. I thought a home unit would be perfect to augment my current psoriasis treatment.

Also, I feel it would help my atopic dermatitis. Since tapering down on cyclosporine treatment due to high blood pressure concerns, my atopic dermatitis has become more unpredictable and severe. I mainly use topical steroids for atopic dermatitis, which is not a good long-term solution given the widespread area it affects my skin. My dermatologist and I also considered using Dupixent, the new biologic for atopic dermatitis, but wanted to try the home phototherapy unit first.

While I understand the medical literature is conflicting as to the safety and efficacy of home phototherapy, each patient is an individual and unique case. In my case I need a combination of therapies to keep my immune mediated skin conditions under control.

I do hope that WHA reconsiders approving the phototherapy unit for me given my medical history of using a myriad of treatments over40 years, including home phototherapy.

Sincerely,

Howard H Chang

Second Insurance Denial

The appeals did not work. On March 21st my wife and I heard a package delivered to the front door. Insurance sure does spend a lot of money using FedEx to send denial letters overnight!

The argument now, in addition, is that a phototherapy unit is a convenience item, not unlike a television or radio. What? That’s really what they wrote.

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Excerpt from the letter:

“The following services and supplies are excluded or limited: ‘Personal comfort or convenience items and home or automobile modifications or improvements. This includes, but is not limited to, televisions, radios, chair lifts and purifiers.’ . . . Specifically, a Home UV Photo Therapy Booth is considered a convenience item and is not a coverered benefit.”

I understand that WHA does not want to pay for this unit. But calling it not medically necessary, and a convenience item flies in the face of current dermatologic medical practice. Or am I going crazy? I am going crazy.

I Give Up?

At this time I need to lick my wounds and discuss with my dermatolgist what to do next. At the National Psoriasis Foundation corporate roundtable in Chicago last summer someone mentioned to me that my dermatologist can request to talk to another dermatologist at the insurance. That might be the way to go as the physician who wrote the second letter is not a specialist.

I am also considering buying a scaled down unit directly from the manufacturer. Another option is to just get out in that beautiful California sunshine that should be arriving any day with the coming of spring. WHA can’t stop me from going to my backyard to get some naturaly UVB.

Whatever happens next I won’t give up, though I honestly don’t know how effective more appeals will be. The more I appeal, the more reasons they give to NOT cover the phototherapy booth. Still, at the end of the day, I am grateful for WHA covering my biologics and my family’s hospital stays. But the UVB unit would be nice too.

An Almost Disastrous First Dermatology Visit

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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 →

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.