August is Psoriasis Action Month

Today marks the beginning of a month long focus on taking control of your psoriasis. The National Psoriasis Foundation (NPF) produced this graphic with a comment on how meaningful treating my psoriasis has been for me:

NPF 2018 Action Month Howard Chang

In the past August was designated “Psoriasis Awareness Month.” Recently, though, the change from awareness to action made sense with the emphasis on doing something to make a difference in your quality of life. Now more than ever those of us with psoriasis have many more options to treat and manage it.

I know it’s easy to get discouraged, or get in a rut with psoriasis. My hope is that this month each peson with psoriasis feels empowered to make one change to better their health. My change? Is it cheating to say that I’ve been experimenting with my new phototherapy unit? If so, I definitely need to reexamine my stress levels as July was off the charts.

Things Change, Clear Can Happen

The NPF is sponsoring a number of activities around the theme “Things change, clear can happen” for Psoriasis Action Month. From the NPF:

Things change. Your symptoms change. Your health changes.

With advancements in the number of treatment options available, now more than ever, it is easier to treat psoriasis – and the results can be life changing. Regardless of the type of treatment (phototherapy, topical treatments, systemic drugs or biologics), patients who manage their psoriasis report a higher quality of life, less absenteeism at work and are more productive. Psoriasis Action Month focuses on empowering people with psoriasis to take control of their disease.

A good place to start is to take an online quiz to assess how much psoriasis impacts your life. I took the quiz and was not in the least surprised to find that I got “Severe impact.”

Consider Your Options

If your psoriasis is severe like mine you know it takes quite a bit of effort and energy to manage this unpredictable immune condition. But it’s eye opening to see all the options that are out there to at least try. Some old treatments can work again, too.


As the calendar turned over to August this morning I thought about the long journey that took some fifteen years before I could find some semblance of psoriasis control.


As the calendar turned over to August this morning I thought about the long journey that took some fifteen years before I could find some semblance of psoriasis control without overly worrying about what my treatments might be doing to my overall health.

Cyclosporine kicked me out of a horrible flare that left me nearly unable to function in the mid-2000s. It took over two years of trying this and that before I found cyclosporine. Those years I will never get back with much regret at lost time and opportunities.

But then I became somewhat dependent on cyclosporine. Every treatment I tried to get off of cyclosporine failed. I used it off and on at high and low doses for over a decade despite FDA warnings to the contrary. I did take breaks, but within a couple months into the break my skin raged with inflammation. Even biologics I tried only worked with cyclosporine, not without. My blood pressure began to rise along with my triglycerides.

Today I’m grateful for the many resources and ways I’ve been able to get under better control over the past year or so since I started taking Tremfya and using phototherapy. Some treatments, like Otezla, didn’t help me. Still, though, I appreciated the option to try something new even if in the end the results didn’t match expectations.

For me this psoriasis action month is about taking a step forward, courageously trying something new, and not giving psoriasis too much power in my life.

 

I look forward to sharing more of my recent treatment journey in a couple upcoming guest blogs, on The Itch to Beat Psoriasis on Everyday Health, Plaquepsoriasis.com, and here on Pso Howard!

This August commit to taking action to improve your life with psoriasis and please feel free share how it’s going.

 

 

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 →

My Surprise Visit to Wrigley Field

The day after I turned sixteen years old I took my driver’s license exam. That summer I utilized my license to deliver office supplies around the Bay Area and drive to Southern California with my friend. The highlight of our SoCal trip included taking in baseball games at Jack Murphy Stadium (San Diego) to watch the Padres, Dodger Stadium (Los Angeles) to see the Dodgers, and Anaheim Stadium (Orange County) to watch the Angels.

That’s when my goal of visiting every MLB baseball stadium in American began.

Baseball holds a special place in my heart. Playing Little League baseball as a nine-year old introduced me to American culture. I grew up in an immigrant Chinese family and faced discrimination in those early days. But baseball served as an outlet for an energetic young boy facing uphill challenges with psoriasis and bullying.

Read about My Painful Memories of Living with Psoriasis as a Teenager on my column The Itch to Beat Psoriasis at Everyday Health

My hard-working dad took me to San Francisco Giants games when I earned free tickets for good grades. The Giants gave away tickets to evening games at the frigid and windy Candlestick Park. Still, I loved going to those games watching Jack Clark, Darrell Evans, and Greg Minton out on the diamond.

As a kid I only dreamed of ever seeing a game at places like Fenway Park or Wrigley Field.

Landing in Chicago for HealtheVoices

In late April my daughter Lydia and I flew into Chicago for the HealtheVoices conference–a gathering of over 120 online patient advocates from some forty different disease states. Lydia mainly wanted to see a friend and visit Chicago sites. Since I had more time the first two days we set aside time to see the town together before I became busy with conference meetings.

The first day we went to Millennium Park and Navy Pier. Day two, after my meeting ended in the mid-afternoon, we headed out for an early Chicago deep dish pizza dinner. The walk from the hotel took a bit longer than expected. We needed the exercise so I didn’t mind. By evening, though, the cold wind whipped up reminding me Chicago’s moniker is “The Windy City.”

Riding the “L” After Dinner

I couldn’t help but think about the television show ER, set in Chicago, where the doctors would take the “L” subway system after their shift ended. I wanted to ride the “L” just once to honor that memory. A ride back to hotel turned out to be the perfect excuse to find the nearest station.

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Once seated on the train I figured out our stop for the hotel would only take a few minutes. On the subway map I noticed the Addison Street station stop a bit farther north than the stop for the hotel. I also somehow remembered that the Chicago Cubs play at Wrigley Field on Addison Street. A quick Google search confirmed we could see the baseball stadium if we took the “L” a few more stops.

Later we learned that the neighborhood around Wrigley Field isn’t necessarily the safest. Unknowing tourists traveling on a whim sometimes don’t know any better. Besides, with wanting to see the San Jose Sharks playoff game against the Las Vegas Golden Knights later that evening, we’d only have enough time to take a quick picture.

To my surprise the stadium lights lit up the night sky. People milled around the stadium and storefronts welcomed customers. All signs pointed to Wrigley Field playing host to a Cubs home game.

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Buying Tickets from a Reseller (Okay, Scalper)

We ran around the stadium to find the front entrance where I could take a quick picture. The tied game against the Milwaukee Brewers had entered the bottom of the fifth inning. As soon as Lydia took this photograph of me the ticket resellers (scalpers) descended on us like vultures spotting prey.

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The first offered me a bargain basement $25 a ticket for, of course, the best seats in the house. I politely said no then walked away. The second wanted to sell me lower deck seats for $10 each. I said no and walked even further away. He followed me for about twenty yards. After a short whisper deliberation with Lydia, I told him I would buy the tickets only if he walked to the entrance gate with me to confirm their legitimicy.

A few minutes later Lydia and I entered into Wrigley Field for the first time. The tickets gave us a great view along the left field line with some obstructed view only above us.

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A few minutes later Lydia and I entered into Wrigley Field for the first time. The tickets gave us a great view along the left field line with some obstructed view only above us.

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Singing “Take Me Out to the Ballgame” at Wrigley Field

Any baseball fan knows how iconic singing “Take Me Out to the Ballgame” during the seventh-inning stretch is at Wrigley Field, especially with legendary Harry Caray. A great MLB article Famous fans stretch their pipes at Wrigley describes this Cubs tradition. I waited expectantly for the top of the seventh to finish then signaled to Lydia it’s time to sing.

Here’s a video of that memorable moment:

 

Immediately after the song ended we ran for the exits wanting to avoid the rush out of the stadium. On the way out we stopped at the gift shop, took a quick pit stop, and snapped a few more photos.

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The Cubs ended up winning 1-0, with the winning solo home run by Kyle Schwarber hit in the bottom of the sixth inning.

You never really know what adventures life might take you on when you get invited to a conference because you’ve blogged about psoriasis for over ten years. Or you decide to take the train instead of walk after dinner. Or what might happen if you stay on that train for a few stops longer to see a baseball stadium.

On that late April evening in Chicago I crossed another item off my bucket list: taking in a baseball game at Chicago’s Wrigley Field. All made possible because we felt adventurous after eating deep dish pizza.

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.

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.