Tremfya is much, much harder to get than I imagined

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I took this photo of the sunset over the ocean on last month’s Alaska cruise. It reminds me of calmer waters and more joyful times as I persisted in getting my Tremfya prescription right over the past few weeks since.

The journey began in May simply enough: get Tremfya renewed for another year at a new specialty pharmacy. I have continued to use my previous dermatologist’s prescription this year, but with a new doctor I needed a new prescription at a differeent pharmacy starting this summer.

My dermatologist and I decided to request every 6-week dosing, which we both thought would be denied. But it was worth a try, right? No. Denial came swiftly and ended up costing me a lot of time waiting and on the phone.


My dermatologist and I decided to request every 6-week dosing, which we both thought would be denied. But it was worth a try, right? No.


For me simple is never that simple when it comes to getting the newer, more expensive (good) medications to treat severe psoriasis.

(Barely) Qualifying to Receive Tremfya Coverage

After the DENIAL for every 6-week dosing schedule for Tremfya, I was glad to see they approved every 8-week schedule. It’s what I expected anyhow since it makes financial sense for the insurance provider to not pay more than it has to, even though I’ve shown I need a higher frequency dosing.

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With that letter describing how 6-week dosing is not covered, WHA did explain the criteria for receiving coverage for Tremfya. I couldn’t believe how incredibly restrictive the criteria are, including failing two of the newer medications/biologics:

WHA [Western Health Advantage] covers Tremfya when all the following criteria is met:

[1] when prescribed for moderate to severe plaque psoriasis confirmed by a dermatologist (psoriasis affects 10% or more of the body; psoriasis involves hands, feet, and neck or genitalia).

AND

[2] prescribed by a dermatologist

AND

[3] the patient has tried and failed topical therapy (e.g., Dovonex, Tazorac, or other topical steroids),

AND

[4] documented failure or clinically significant adverse effects to one of the following therapies alone or in combination, unless contraindicated: methotrexate or (if methotrexate in contraindicated) cyclosporine, acitretin, or a trial with PUVA or UVB for at least 3 months unless intolerant,

AND

[5] documented failure or significant adverse effects to at least two of the following: Humira, Otezla, Stelara, or Cosentyx.

Initial approvals are considered for 3 months to assess patient’s response and renewals for one year.


I couldn’t believe how incredibly restrictive the criteria are to receive Tremfya, including failing two of the newer medications/biologics.


This is how I imagine the insurance provider reviewer went about his job when fe came to my case: Continue reading →

42 Weeks with Tremfya: Coping with a Skin Flare

Beautiful flowers in Sitka, Alaska, taken during a stop on our summer Alaska cruise vacation with family.

A couple weeks ago marked the 42nd week on Tremfya (guselkumab) and the 7th injection. I started in mid-August last year with about ten months elapsed since that first injection on the day of solar eclipse in August.

At this point in my treatment cycle I hoped to have more stability with my skin. But skin flares do happen even while taking the best medications.

What a Bad Skin Flare

Somehow I think that if I’m taking a super expensive biologic for psoriasis that I’m entitled to clear skin. Expectations often wreak havoc on my mood when I think this way. As an optimist and idealist it’s quite easy to bring those unrealistic expectations to the new medications I take.

When my skin flared like a wind swept wildfire a month ago I felt overwhelmed. Between the darker red spreading psoriasis spots and the generalized bumpy rash all over my body I could only feel normal skin in a few places. My mood darkened as I went into coping mode.

When my skin flared like a wind swept wildfire a month ago I felt overwhelmed.

A few factors appeared to contribute to the flare: increasing phototherapy dosage too quickly; Tremfya losing effectiveness at the end of the 8 week cycle; completely stopping cyclosporine; stress at work with a demanding spring; and a busy schedule with end of school year activities for the kids.


Follow my Tremfya journey!

Tremfya (Guselkumab) Week One  

3 Weeks with Tremfya: The Waiting Game

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)

38 Weeks with Tremfya: The Q&A Edition


Employing Poor Coping Strategies

I’m not proud to report that during the flare I didn’t cope well at all. I did continue my skin care routines including taking a break from phototherapy and using steroids with wet wraps a couple times. But my expanding gut tells me that I ate way too much junk food. All those pastries, ice cream, donuts, extra shots of espresso, greasy burgers, and chips of all sorts no doubt made my skin even worse.

I also tend to stay up later when my skin flares. In an ineffective attempt at avoiding caring for my skin I delay my shower and night time skin routines. Instead I play games on my cell phone, (binge) watch Netflix shows, work on emails, or read online sports news. Eventually I get going on what I need to do, but much later than I’d like. The next day I’m naturally tired and wanting naps in the afternoon.

I really could use more margin in my life for when difficulties like skin flares inevitably come. It’s not that I don’t know better ways to cope when my health tanks. But if I’m already tired and stressed I don’t have the will nor the energy to counter those cravings to eat junk food and stay up late.

I really could use more margin in my life for when difficulties like skin flares inevitably come.

Thankfully, vacation came at a great time. A week on an Alaska cruise settled my mind, gave me much needed time away from work, and allowed the new Tremfya injection to start working.

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Waterfall next to Mendenhall Glacier in Juneau, Alaska

Treatment: A Work in Progress

I hear stories of how long it takes to finally find a treatment plan that effectively manages psoriasis while minimizes risk. Some people go through multiple treatments, including combinations of various medications such as topical, phototherapy, systemic pills, and injectable biologics.

I feel like I’ve been trying to find that elusive treatment plan for the past twelve years. When the systemic Soriatane with phototherapy stopped working for me in the mid-2000s my skin would not stop peeling and scaling. Pure misery. I tried new biologics, went back to methotrexate, and even tried coal tar. Nothing worked.

Cyclosporine turned out to be the most effective medication for my psoriasis and eczema. However, it is only FDA approved for psoriasis for one year because of it’s toxicity to the kidney and other side effects. I used cyclosporine off and on for the next decade while trying each new biologic, although the breaks would only last a couple months before I needed to start up again.

Psoriasis treatment just feels like a work in progress, especially when that bad flare comes along unexpectedly.

Now I’ve finally stopped cyclosporine while taking Tremfya and experimenting with phototherapy. Psoriasis treatment just feels like a work in progress, especially when that bad flare comes along unexpectedly.

Time to end this entry with a photo of a cool glacier in Alaska to remember those calmer days. Too bad I can’t just go back here whenever my skin flares!

Margerite Glacier

Glacier Bay National Park, Alaska

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)

42 Weeks with Tremfya: Coping with a Skin Flare


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.

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.

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 →