Category Archives: psoriasis

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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psoriasis, Psoriasis Treatments

Tremfya (Guselkumab) Week One

One week ago, I started taking Tremfya (guselkumab) for my psoriasis. The journey to taking that injection started months ago when I talked to my dermatologist about it. I then learned a lot more about its efficacy and safety at the American Academy of Dermatology meeting in Orlando in March.

I’m a bit stunned that I’ve already taken my first dose.

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Follow my Tremfya journey

3 Weeks with Tremfya: The Waiting Game

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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Tremfya Approvals

Tremfya received FDA approval in mid-July. I made a drop-in over lunch appointment with my dermatologist to get my prescription two weeks after. He prescribed it to me, but nothing happened for at least a week. I figured insurance held it up again, but turned out the medication hadn’t entered the pharmacy’s computer system.

After another two weeks passed I received a call from the UC Davis Health specialty pharmacy. I couldn’t believe insurance approved my taking Tremfya! They would ship it in a cooler pack on a Friday. I made an appointment the next Monday with the RN at the UC Davis Dermatology clinic to get training before injecting the first dose.

Pharmacist Counseling

I appreciated the pharmacist from the specialty pharmacy going over all the pertinent details and preparing me for what to expect. Tremfya would be my first new biologic for a few years as I settled in with Enbrel (etanercept) even though it wasn’t as effective as I wanted.

First, she told me to continue taking cyclosporine until I saw my dermatologist next. Enbrel I would stop on the Thursday before the first dose.

Tremfya is injected with a pre-filled syringe with about 1 ml of fluid and a small half inch needle for the 100mg dose. I thought it would come with an injection pen like Enbrel, but not so. I have quite a bit experience with syringes from Enbrel pre-injection pen days. The dosing schedule is week zero, week four, then every eight weeks thereafter.

Next, I learned of some the potential side effects of Tremfya, such as headache, upper respiratory infection/colds, and injection site reactions. I felt relieved to know that patients generally tolerated the medication well, with no black box warnings on the insert.

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As scheduled the Tremfya arrived in a box, which was in a box with a cooler in it. My daughter signed for the delivery. The label said that one dose cost $9995. Thank God for insurance, however much I might complain about them.

First Tremfya Dose

As Monday approached the excitement and anxiety for the first injection ramped up. My wife drove me to the dermatology clinic about thirty minutes from home in Sacramento. The appointment coincided with the solar eclipse, which I enjoyed through a hole in cereal box as we drove east.

I couldn’t sit still as we waited for the nurse to call me back. Questions raced through my mind: Would Tremfya work for me? Would I have an adverse reaction to it? Would the needle hurt going in? Would the syringe be difficult to use?

The nurse finally called me to a room where we set up the injection. She had a Tremfya training syringe ready for me to practice first without a needle. In the meantime, we allowed the medication to warm up to room temperature to minimize any pain I might experience from the injection.

Then the nurse taught me how to swirl the alcohol wipe from the inside out. She told me to inject in my thigh, but I felt more comfortable injecting in my stomach. She instructed me to sterilize a larger area so I wouldn’t worry about finding the exact site on my stomach.

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I practiced with an empty Tremfya syringe with no needle before injecting the real thing.

The springs on the syringe felt different than the Enbrel where I needed to pull the medication into the syringe and push out bubbles. I pinched a portion of my stomach then injected it smoothly in.  I pushed down the plunger slowly as she counted down from ten—twice. Once I finished the injection the needle sprung back as the plunger locked in place.

No pain. No blood. Easy. It took less than a minute for that first dose to get in my system just under my skin (subcutaneously).

For the next hour, I sat in the surgical dermatology waiting room as the nurse checked on me every fifteen minutes. I felt some light headedness, headache, and blurry vision—not sure if the medication, the anxiety of the buildup to the injection, or lack of food ultimately caused me to feel that way.

One Week After Taking Tremfya

During the next week, I checked my skin nervously to look for any changes. After some research, and talking to my doctor, I learned that I probably would not see any good response with my psoriasis for at least a few weeks with response rates starting to plateau around ten weeks (though still increasing for some weeks after).

Through more reading, I did learn that the half-life of Tremfya is about 15-18 days, and that the peak concentration would be about 5.5 days. I also found a paper in the New England Journal of Medicine on phase 2 trial data with a chart showing the response rate of those in the trial. The response rate of the phase 3 trials I found soon after looked closely aligned to the phase 2 trials.

During the week, I did feel a bit more tired, and possibly catching a cold with a slight sore throat. But I can’t say for certain it is the medication causing these symptoms. So far, the eczema rashes I fear emerging as they did with a previous biologic haven’t. Knock on wood. The immune system is so complex.

My next injection is in three weeks. I’m looking forward to hopefully sharing good news about my experience with guselkumab.

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