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

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.

How My Wife and I Support Each Other Through Chronic Illness

Howard Chang and his wife Lori found that being open about their chronic conditions brought them closer together.

Lori and I took this picture at the spot we got engaged in 1993 near Ghiradelli Square in San Francisco. It’s one of my favorite recent pictures of us together.

Happy Valentine’s Day to my dear wife, Lori! I can’t believe we met about 25 years ago at U.C. Davis as undergraduates. We bonded very quickly over the experiences of living with lifelong health condtions. Those health conditions persist to this day, with a few added to the picture as we become middle-aged. I would even say that psoriasis helped me find my wife

I wrote the following article for The Itch to Beat Psoriasis on Everyday Health a couple years ago on ways to support a loved one with chronic illness. I’m adding it here below as a reminder on Valentine’s Day of how far we have come through each other’s support and care.

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3 Ways to Support a Loved One With Chronic Illness

Finding the perfect gift for my wife, Lori, is always tricky. That’s because it’s not easy to express how much she means to me. She’s stood by as my main support through everything for more than 20 years, including living with a guy who has severe psoriasis.

As a minister, I officiate weddings and work closely with couples preparing for marriage. I always tell them that the center of the ceremony is the vows. The vow to love “in sickness and in health until death do us part” strikes me as especially solemn.

Many young couples sitting across from me do not truly comprehend the impact “in sickness” can have on their future lives. I know that Lori and I didn’t when we married in our early- and mid-twenties.

We hit it off immediately when we met as college students at the University of California, Davis. The two of us could speak for hours about anything and everything. We could especially relate on so many levels when talking about living with serious health conditions.

Lori was born with spina bifida, a neural tube defect that leaves the spinal cord and nerves open to damage. Doctors call hers a one-in-a-million case thanks to successful neurosurgery a few hours after birth. The condition did leave her with incontinence and neuromuscular weakness, but it could’ve left her incapacitated in a wheelchair.

The two of us could speak for hours about anything and everything. We could especially relate on so many levels when talking about living with serious health conditions.

Every year, I accompanied Lori to an all-morning spina bifida clinic. She stayed in an exam room while medical providers from nine different specialities, including neurology, urology, and nursing, checked her. After lunch, they discussed the patient’s condition and gave recommendations for follow-up.

During one visit, her worsening incontinence took center stage. The doctors and nurses couldn’t find a solution, suggesting possible surgery. I felt helpless as I witnessed her daily struggle trying to work and be a mom while emotionally frustrated by her condition. It took years to figure out how to best manage the incontinence, though no surgery was necessary.

My psoriasis also posed its challenges for Lori. She didn’t really understand or have much knowledge about the condition when we met, or during the early years of our marriage.

Lori admits she thought it was just a manageable itchy rash … nothing much to worry about. It would flare up at times, but there was oral medication, topical treatments, and dermatology appointments to get through it. Besides, Lori’s mom was facing terminal cancer, and the ensuing family drama after her death definitely took priority.

On the journey, Lori and I learned how to better support each other while managing our own anxieties, fears, and frustrations. Drawing from our experience, we brainstormed a few tips for people in support roles as they care for the most important people in their lives. Continue reading →

16 Weeks with Tremfya: The Verdict?

August 9, 2017 Huntington Beach, CA. I took this photo just before starting Tremfya in August in one of my favorite spots in the world.

I started my Tremfya (guselkumab) journey on Monday, August 21, 2017. Sixteen weeks is an important point to evaluate as clinical trials use this time to evaluate new medications. On December 11, after three injections (week 0, 4, 12), I reached that interim endpoint.

The clinical trial data shows that more than 90% of patients showed greater or equal to 75% improvement at 16 weeks. When I took that first injection, I hoped my body would assimilate Tremfya safely, while effectively shutting down the psoriasis inflammation all over my skin.

Below I evaluate my experience with Tremfya at 16 weeks. The following “verdicts” reflect a moment in time, and certainly are not final. As a disclaimer, my observations are from my personal experience only, and should not be construed as making any claims or predictions for anyone else who might try Tremfya.

How well is Tremfya working for me?

Quite well! After a roller coaster few months with tapering off of cyclosporine, atopic dermatitis (eczema) flares, and super stressful stretches of work, I’m amazed at the level of psoriasis clearance. I’m still on a small, small dose of cyclosporine, but no other biologic gave me this much skin clearance working together with even higher doses of cyclosporine.

After a roller coaster few months, I’m amazed at the level of psoriasis clearance with Tremfya.

I have yet to see my dermatologist this month (that is another story altogether trying to get an appointment with him), so I can’t say what percentage improvement I’ve experienced. But my guess is at least the 75% clearance, and probably more.

I promised photos in my last update. The following photos from July, October, and and December don’t lie.

Continue reading →

5 Psoriasis and Eczema Winter Skin Care Tips

I published this blog for The Itch to Best Psoriasis on Everyday Health in January this year. This reprint has a few update modifications. Great reminders for myself as I ward off rashes and try to control the dryness that heating causes in the winter cold. 


Every winter, I sense the need to adjust how I care for my skin. Freezing cold night temperatures give way to cold, shortened days. My wife likes to turn up the heater, as do my workplace and the stores I frequent. I enjoy a hot shower too. But I know that my psoriasis and eczema don’t necessarily take well to dry, heated air and long, hot showers.

It could be the stress of the holidays, it might be because my medications have lost their effectiveness, or it could just be winter. Whatever the cause, I’m needing to take extra measures to make sure my skin is well managed and cared for.

When I visited my dermatologist, Dr. Emanual Maverakis of the University of California, Davis Health System last year, I wondered what winter skincare tips he and his resident Dr. Tatyana Petukhova might have for those of us living with psoriasis and eczema.

My years of experience have helped me develop ways to manage any inevitable winter flare-ups. Here are my five recommendations with a few of my doctors’ thoughts peppered in.

1. Be Sure to Moisturize and Humidify

Without a doubt, this tip to moisturize is the one my dermatologists recommended first. Dr. Maverakis noted that  using heaters in the winter dries out the skin, so more moisturizing is needed. That’s my experience as well.

I took a couple of climatology classes in college. One professor used the analogy of two different-sized buckets to explain relative humidity. If you have a small bucket, and it’s 80 percent full of water, then you would say it’s quite full.  But if you put that same amount of water in a big bucket, it might only be 20 percent full.

Cold air is like the small bucket, and hot air is like the large bucket. When cold air is heated up, as it often is indoors in the winter, the relative humidity drops. Unless water is added back into the air, such as with a humidifier, the dry air will dry out your skin.

Dry skin will easily become itchy and irritated. In the winter, it seems to dry out even faster than usual.

I’ve noticed my skin is like a hygrometer, a device that measures humidity. I can tell when my skin is dry and needs more moisturizer. Plus, dry skin will easily become itchy and irritated. In the winter, it seems to dry out even faster than usual.

When moisturizing, I start with a layer of a lotion with ceramides (mainly for eczema) to add moisture, then lock in the moisture with a thicker, petroleum-based cream. If I am moisturizing after a bath or shower, I moisturize within a couple of minutes of getting out to trap the moisture in my skin. It took me some time experimenting with different moisturizers, and talking with my doctors, before I settled on a regimen that works for me.

Finding the Right Moisturizer for Psoriasis & Eczema

Having a humidifier in the living room, bedroom, and the office helps too — especially during those cold and dry times. Dr. Petukhova also recommended using humidifiers, noting the need to “clean them regularly” and use a humidity level “that feels comfortable.”

2. Avoid Long Hot Baths or Showers

Simply put, hot water dries out your skin, and that’s generally not good for psoriasis or eczema. My dermatologists noted this tip as second important after moisturizing. But I confess I like to bathe in hot water in the winter. When it’s cold outside, or even cool, doesn’t everyone enjoy a hot shower or bath? After seeing Dr. Maverakis, I turned back the temperature of my shower and cut down the time.

I also will take 10- to 15-minute soothing baths. I sprinkle an over-the-counter oatmeal bath packet into the water as the bath is being drawn, then I add some moisturizing oil. When I get out of the tub, I put on extra layers of moisturizer. This system seems to be working well so far, but it’s hard to give up the hot water.

Continue reading →

14 Weeks with Tremfya: What’s Next?

20 Weeks with Tremfya: Read the Instructions! (4th Injection)

24 Weeks with Tremfya: A Pattern Emerges

I found this photo online that reflects how I feel–looking up for answers into the gray building and sky, not knowing what’s the next move.

For much of the last year I looked forward to taking Tremfya (guselkumab) to treat my severe chronic psoriasis. My dermatologist suggested I hold off on the new IL-17A inhibitors until it was FDA approved.

I continued with a combination of topical steroids, Enbrel (etanercept), and Neoral (cyclosporine). That regimen worked fairly well for some years. But it seemed Enbrel lost effectiveness over the years, and cyclosporine’s long-term side effects started to develop. A little over 14 weeks ago I finally started Tremfya.

Now almost three months into the new treatment I am asking a question I hoped not to need to ask: what’s next?

Skin Condition Update

I won’t make any final or definitive evaluation of Tremfya’s effectiveness quite yet. Week 16 is when the study trials report efficacy anyhow. Charts show the medication continuing to work for weeks after, even though the curve flattens. I can say that overall psoriasis is under better control than with Enbrel and higher dose cyclosporine. Continue reading →

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)