24 Weeks with Tremfya: A Pattern Emerges

Twenty-four weeks ago on Monday, August 21, 2017, I took my first injection of Tremfya (guselkumab) to treat my severe psoriasis. That day I witnessed a solar eclipse as I drove to the dermatology clinic in Sacramento. I recalled the day in grade school (February 26, 1979) when the last total solar eclipse occurred in the Northern Hemisphere. That’s around the time when the first psoriasis lesions emerged on my skin.

Over the course of those almost four decades between total solar eclipses I’ve battled severe psoriasis. Sadly, few treatments helped to effectively relieve the inflammation over those years.

I survived messy and smelly coal tar formulations, phototherapy burns, painful side effects of soriatane/etretinate, liver biopsies with methotrexate, rising blood pressure with cyclosporine, and five biologic mediations with injections. Not to mention the strange diets, supplements (I need write about the snake skin powder), alternative Chinese medications, and other unmentionables I tried to “cure” my psoriasis.

Over the course of those almost four decades between total solar eclipses I’ve battled severe psoriasis. Sadly, few treatments helped relieve the inflammation over those years.

Would Tremfya finally be the treatment to eclipse the nagging psoriasis all over my skin?

High Hopes and Expectations for Tremfya

Going into the clinic for my first injection I felt both excited and nervous. All those hopes and dreams of wanting to find “the one” treatment rested in that syringe full of medical innovation. That’s a lot of pressure and expectation on one treatment.

I knew before long that Tremfya would not be the cure I desired, even though it never promised to be one. By week 6 I began to redefine my expectations:

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.

Going into week 21 I’m not fretting about whether or not Tremfya will work or not. Instead, I’m observing a pattern emerge on how it works with my psoriasis. Continue reading →

Hitting My “Treat to Target” Goals After 6 Months?

I wrote this article for the National Psoriasis Foundation as an update to my Treat to Target experience earlier this year. The editor decided to take excerpts from below as a postscript and republish as An ongoing experiment with Treat to Target.  See the postscript below for a brief week 13 with Tremfya update.

Here is the full article:

Psoriasis treatment for me is a series of starts and stops, and then restarts. In the past, I focused on finding something that effectively calms down the inflammation in my body so I can at least function at my job. When a treatment stopped working, or a new treatment proved unhelpful, I moved on to the next one. I find treatment rarely follows a dependable straight-line path for the foreseeable future.

Earlier this year my approach to treatment changed after I read about the National Psoriasis Foundation’s Medical Board’s “Treat 2 Target” treatment strategy. They established the goal of 1 percent or less psoriasis on the body within three months of treatment. An alternate acceptable goal is to maintain 75 percent improvement of psoriasis skin involvement in three months. These treatment goals inspired me to not accept “good enough” and strive for better results.

Of course, treatment decisions are individual and meant to be worked out with medical providers. Knowing I needed to consider change to more effective medications, I talked to my dermatologist about setting goals at my first appointment of 2017.

When I wrote about my first Treat to Target experience earlier this year, I hoped to reach the treatment targets I set with my dermatologist, Dr. Maverakis within the three or six-month time frame. Unfortunately, circumstances did not work out as I wished. 

Hitting Targets Can Take Time

Many variables came into play as I strived for at least 75 percent psoriasis improvement. First, I ultimately decided not to do the treatment my dermatologist first prescribed for me. He wanted me to try Goeckerman therapy, a combination of coal tar and phototherapy. At first I went along, but over time I became less enthusiastic about the time consuming and messy nature of the treatment. Several poor experiences with phototherapy in the past proved difficult to overcome as well.

The next option we considered, the innovative biologic Tremfya (guselkumab), would not gain FDA approval until summer at the earliest. In the meantime, I asked if I could try a newer systemic medication. While my dermatologist agreed to prescribe it for me, my health insurance provider ultimately denied covering it. Eventually the drug manufacturer agreed to provide it for free after I applied to their patient assistance program. In the end, receiving the medication took almost six weeks.

The next twelve weeks became a roller coaster ride with the new systemic medication. I managed the ups and downs of challenging side effects and waited day after day to see improvement. My dermatologist and I decided to stop it due to lack of response. In fact, my psoriasis seemed worse.

Hitting those targets took much more effort and time than I expected. But setting the goals kept me focused on reaching them however many setbacks I faced.

Months into my Treat to Target experience I felt disappointed and at a loss what to do next. Hitting those targets took much more effort and time than I expected. But setting the goals kept me focused on reaching them however many setbacks I faced.

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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?

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

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New Treatment, Renewed Hope

Around the time my dermatologist and I decided to stop the systemic medication, the FDA approved Tremfya. Dr. M. asked me to come to the clinic the next day at lunch time so he could see me without an appointment. A few weeks later I became the first patient to use the new biologic medication in the University of California, Davis Health System.

Once again, I feel hopeful that I can reach the treatment targets Dr. Maverakis and I set earlier in the year.  A few weeks into treatment psoriasis lesions on my arms and legs started to slowly fade, becoming flatter and less scaly. Although I experienced new outbreak in the next couple weeks, those lesions began to disappear soon after. I’m optimistic that clear skin is possible in a couple more months.

Once again, I feel hopeful that I can reach the treatment targets Dr. Maverakis and I set earlier in the year.

The path to clearer skin, however, might take a turn for the worse at the end of the year. I’m losing my dermatologist as his medical group will no longer participate in my health insurance provider’s network. I want my new healthcare providers to continue the goals and treatment I started this year, but I have no guarantees that they will.

I’m not too worried, though, about what comes next. My experience with Treat to Target so far tells me that obstacles and challenges to reach treatment goals come in many different forms and ways. Keeping the goals in mind, while adopting a flexible attitude, gives me the courage and persistence to overcome them one by one.

Postscript: At week 13 on Tremfya I’m seeing a bit more psoriasis breaking out all over, but especially on my trunk and stomach. I am remain optimistic that in the next few weeeks the injection I took last week will start working!

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 →

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

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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.