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.

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

On Sunday evening I took the fourth Tremfya (guselkumab) injection out of the refrigerator. As I carefully opened the box the instructions fell out onto the desk. I thought, hey, I know how to inject a syringe subcutaneously, so I don’t need to look at it. But a seed of doubt entered my mind: have I really injected Tremfya correctly?

That question became more urgent as I looked over at the specialty pharmacy receipt. Thank God that my health insurance company pays for this expensive biologic. The receipt shows the cost of one injection at $9,500.65. I joked with my daugher I could just about pay her three-year car lease with one injection. I could pay for a lot of stuff.

I could not afford, though, to mess up this injection.

The First 30 Minutes

What I first noticed about the instructions is how to pronounce “Tremfya.” Next, I wish the cover told me how to say “guselkumab,” but I suppose that is for another day.

Tremfya Instructions Cover

The instructions unfolded in accordian style across my keyboard on my desk. I naturally jumped straight to the first step: “Prepare for your injection.” Basically this step says to take the Tremfya box out of the fridge and let it sit on a flat surface at room temperature for at least 30 minutes.

This is a step I should not be able to mess up. But when I took my first dose the nurse did not let it warm up for as long as instructed. I guess her impatience got the best of her. Or, she didn’t read the instructions. I’m glad I started to, and encourage anyone taking a new mediction to do the same.

Time to Inject Already?

Thirty minutes is plenty of time to scan the rest of the instructions and watch a bit of Netflix. Still, that half hour passed too quickly as I hate injections. Self-injections take that hate to another level. Self-injecting with a syringe, not the hit-a-button pen, takes a bit of skill on top of courage.

I hate injections. Self-injections take that hate to another level. Self-injecting with a syringe, not the hit-a-button pen, takes a bit of skill on top of courage.

After stalling for a few more minutes, I picked my injection site and cleaned it with an alcohol wipe. Then I pinched up a bit of tummy flab. In a “dart-like motion,” I finally inserted the needle at a 45 degree angle into my skin. The needle went in quickly and smoothly, although when it pulled out (it does so automatically when all the liquid is pushed in) a bit of blood welled up on the inject site. Applied pressure with a clean cotton ball stopped that nonsense.

After Injection Reaction

As with the other three injections, I felt a bit light headed after the injection. This time the injection site felt a bit itchy as well. I’ve noticed how my asthma perks up slightly with this medication. So, I took a precautionary puff of rescue inhaler beforehand like I do before exercising. I welcomed the fatigue I feel after the injection as I needed to sleep after a huge day at church.

My other reaction was emotional. 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 →

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

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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)