Tag Archives: Tremfya

psoriasis, Psoriasis Treatments

6 Weeks with Tremfya: Redefining Expectations

The sunsets here in Northern California’s Central Valley can light up the sky with a myriad of colors. I took this shot while exercising, reminding me how precious moments like these are to not waste–especially as the wait for Tremfya’s ultimate result continues.

When I started taking Tremfya (guselkumab), I carried an unstated goal and expectation: clear skin. I looked at the graphs and incredible data on the effectiveness of Tremfya and just figured I could enjoy life with less and less psoriasis over the course of sixteen weeks.

At six weeks, some forty-two days later, I’m readjusting my expectations.

I know I need to wait another couple of months to see the full effect of Tremfya on my over-active immune system. But so many other factors become involved in how my skin looks than if I take an injection every eight weeks or not. I just hoped that the new injection would strong arm all those other triggers to where they would give up their fight.

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Follow my Tremfya journey:

Tremfya (Guselkumab) Week One

3 Weeks with Tremfya: The Waiting Game

5 Weeks with Tremfya: Biggest Fear?

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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They are not giving up so far. The biggest factor appears to be tapering cyclosporine. I knew that psoriasis and eczema would inevitably rebound as in the past. While I enjoyed some relief from psoriasis after a few weeks on Tremfya, over the last couple weeks all kinds of rashes broke out on my scalp, trunk, legs—almost everywhere. The spots that went away a few weeks ago came back as itchy, red, and irritated sores.

Tremfya might still win out in the end, but the process is not the straight line to spotless skin I imagined or hoped.bNow that I’ve come back down to earth, what are my expectations for Tremfya? How do I define success if it’s not clear skin with no complications?

Lowering Expectations

As a graduate student, I carried high expectations for everything. I thought I only needed to say something once then (most) everyone would agree and understand. I figured that if I learned a lesson that I learned it for life with no relapse. I expected my work at church to be as easy as learning in school.

My mentor pulled me aside to gently tell me to lower my expectations for just about everything.  What?! That sounded so wrong to my idealistic brain. But my mentor passed on wisdom that applied to so many aspects of my life since, including psoriasis.

So, I’m lowering my expectations for Tremfya. I do hope this awesome new medication can beat the lowered expectations.  But if it can’t quite climb to the top of that mountain, I’ll take something less. I’ll take less than clear skin. I’ll accept if it needs something other than cyclosporine, such as phototherapy, or stronger topical treatments, to work more effectively at suppressing psoriasis.

Of course, I still hope it clears my skin in a couple months. But if it doesn’t by week seven or eight, I won’t fret about it not doing its job . . . at least not quite yet.

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Of course, I still hope Tremfya clears my skin in a couple months. But if it doesn’t by week seven or eight, I won’t fret about it not doing its job . . . yet.

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Raising Awareness

In the meantime, week 6 of Tremfya coincided with the second annual TeamNPF Walk in Sacramento. Last year we registered about 50 people and raised just over five thousand dollars. This year we hit 75 people and seven thousand five hundred raised!

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I’m amazed at how little people know about psoriasis, and the resources available to them. My motivation and encouragement comes from every time someone says that they never met others with psoriasis, or how difficult living with psoriasis can be.

My family came out early in the morning on a Saturday to join the walk and volunteer to lead the walk group. Their support and love means the world to me as I pour so much of my life into inspiring, empowering, and advocating for those impacted by psoriasis.

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Verse of the Week: Isaiah 53:4-5

This verse from Isaiah once haunted me. The suffering servant brought healing to wounds. So why aren’t my wounds of psoriasis gone, I wondered. I came to accept that they are healed, but perhaps not in this lifetime or in the way I might expect.  Now the verse is comfort to me as I put my hope in a future redemption of this body–no matter what happens with Tremfya or any other medication.

Surely he took up our pain
    and bore our suffering,
yet we considered him punished by God,
    stricken by him, and afflicted.
5 But he was pierced for our transgressions,
    he was crushed for our iniquities;
the punishment that brought us peace was on him,
    and by his wounds we are healed.

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psoriasis, Psoriasis Treatments

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)

 

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psoriasis, Psoriasis Treatments

The Waiting is the Hardest Part: A Reflection on Psoriasis Treatments

About five years ago I wrote about starting a new treatment, Stelara, in The Itch to Beat Psoriasis. I wrote about waiting in a similar fashion last week, also after three weeks of treatment–this time on Tremfya (guselkumab). Yesterday I took my second Tremfya injection, ever hopeful for a good outcome.

I especially recall the story about the July 4th fireworks blowing up after some people waiting for hours. I waited 6 months for Stelara to calm my psoriasis, but to no avail. We both did not get what we waited for. The article helps remind me there are no guarantees with treatments, and that waiting can be a valuable learning process–however painful.

Here is a lightly edited version of that article. Continue reading →

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psoriasis, Psoriasis Treatments

3 Weeks with Tremfya: The Waiting Game

The beach at Point Montara Lighthouse (south of San Francisco) proved a wonderful and peaceful spot to spend Labor Day Sunday and Monday with a church group.

Are we there yet? It’s a question every parent has heard asked by a child in a long line or road trip. After three weeks on Tremfya (Guselkumab) I know I shouldn’t be asking the question, but I’m anxious to know when I might find clearer skin. It’s a waiting game that I feel like I’m losing.

I don’t have exact data on when people’s psoriasis started responding to Tremfya. During Phase II trials one paper mentioned patients saw response by the four week check-up. But my dermatologist agrees with the charts I’ve seen where many people respond after the second injection at week 4.

When Will Tremfya Start Working?

In my quest to understand more about how long I might need to wait, I began reading about medication half-life, loading doses, and steady-state concentrations. I seriously want to talk to a pharmacist or a doctor who can explain pharmacokinetics to me. Or I need the pharmacokinetics for dummies book if one’s available.

What I gathered is that it takes 5-7 half-lives for a medication to build up to the desired concentration (steady-state) in the body. I always thought of half-life in terms of degradation, i.e., the time it takes for something to degrade by half (then another half from there). You know, as in carbon or radioactive dating, But apparently there is also a half-life for the concentration of a medication to build up in the body.

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What I gathered is that it takes 5-7 half-lives for a medication to build up to the desired concentration (steady-state) in the body.

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Tremfya’s mean half-life is 15-18 days. With taking the average of the mean (okay I’m just going to use 16.5 days for the sake of argument) 5-7 half-lives would be about 83 (12 weeks) to 116 days (16.5 weeks). The extra dose at week 4 adds another factor I’m not sure how to calculate, but speeds up the process. Another factor, I’m reminded by my pharmacist today, is the time it takes the medication to calm the inflammation on my skin even after reaching steady-state levels in my body.

So, when the charts show the majority of people’s psoriasis responding between 4 and 12 weeks, that matches with my super rudimentary, untrained calculations and what clinical trials show.

I wish today were week 4 (upcoming Monday) so I could take that second injection. Unfortunately, I’m just a couple days past week 3. Are we there yet?

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Follow my Tremfya journey

Tremfya (Guselkumab) Week One

5 Weeks with Tremfya: Biggest Fear?

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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Two Weeks with Tremfya on Labor Day

I marked two weeks on Tremfya on Labor Day last Monday. The second week on the new medication felt uneventful psoriasis wise. I thought I started seeing some response to the medication on my stomach and back about ten days into the treatment, but those spots returned a few days later. At the same time, my forearms and lower legs do look more clear of psoriasis.

A few more psoriasis spots popped during the third week as well. But I stopped Enbrel (etanercept) over three weeks ago. It’s possible I’m experiencing a psoriasis rebound from discontinuing Enbrel and lowering my cyclosporine dose.

While I can’t say for certain that Tremfya caused me to feel tired or ill, the second week I continued to feel tired and ill. I slept more than normal. I took asthma rescue puffs into my lungs more than usual. Periodic headaches came and went like the tide. But by the Labor Day weekend I started feeling better. I wonder if those symptoms will return after taking the week 4 dose?

During the third week I started running and walking regularly again despite the California Central Valley heat and periodic smoky air due to wild fires. I love running, and knowing I’m doing something positively good for my health motivates me to keep going in under less than ideal environments.

The Stress Factor

Another reason I might still be waiting for my psoriasis to respond to Tremfya is added stress. That second week I went to meetings or gatherings five out of seven nights. I also scrambled to meet a couple blog deadlines, one of which I ended up missing. I don’t miss deadlines, so when I do I feel behind and STRESSED.

That second week marked the end or psoriasis awareness/action month. To commemorate the month I took the opportunity to speak at a biotechnology company in the Bay Area called Dermira. They asked me to share my psoriasis journey with them during their lunch time staff meeting. A lot more people packed the room than I imagined would attend. That day we drove five hours and spent two hours at the company. Awesome day, but stressful and tiring.

Then, over that weekend, I spoke at church on Sunday then drove one hundred miles to the coast to join a church group enjoying a long weekend retreat. While I loved being on the cooler California coast, I didn’t get the down time typical of a Sunday evening and Monday day off. Add driving, and another day of socializing and working with the congregation, I felt exhausted.

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Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

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My skin gave me the angry looks of red, irritated lesions that emerge during stressful times.

The Guessing Continues

The waiting game is also a guessing game. This blog confirms that I think about what’s happening with psoriasis ALL THE TIME. I try to read the skin “tea leaves,” but only God truly knows what’s going on with my complex immune system. Only he knows what’s going to happen at week 4 and beyond.

I’m reminded of what Jesus said as he taught his followers: Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. (Matthew 6:34). I have lots to manage today, so I better get to it. Staying in the moment helps me pass the time anyhow while waitng for those half-lives.

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