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.

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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!

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)

 

9 Weeks Done with Otezla. Keep Going?

Note: below includes a picture of the current condition of my psoriasis on my back and arms. 

I’m entering the time when I expect to see more results from Otezla at two months. I started this new-to-me medication on May 15th for my psoriasis, and hopefully eczema. Unfortunately, instead of improving, I feel more and more inflammation on my skin than I have in a long time.

I had a great exchange with my dermatologist about Otezla. His response when I mentioned Otezla in the conversation?

🙄

I’ve known all along it’s not his favorite medication. Still, I’m hoping that it kicks in soon so I don’t have to switch medications again.

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My lower back and upper arms are particularly broken out as I taper off from cyclosporine and enter my 3rd month on Otezla.

Tapering Cyclosporine

I’m not sure how much to temper my expectations since I also started tapering from Neoral (cyclosporine).

Neoral is a strong immunosuppressor. So, I’m not surprised it works so well for both conditions. I wouldn’t say I’m addicted to it, although I do like how much it keeps both psoriasis and eczema under control with relatively few noticable side effects. It’s hard to stop taking it for that reason.

This drug scares a lot of people, rightly so, as it comes with a long list of advserse effects, including kidney damage and hypertension. My body, though. tolerates it well. I’ve taken cyclosporine off and on for some years. The dermatologists allow me to go back on it after breaks partly because my labs come back mostly normal each time and it works for me. I’m sad to see it go.

Red Light, Green Light?

Stopping Otezla is also a difficult decision, but for another reason. What if it’s just days or a couple weeks away from reducing all this inflammation? I suffered the side effects for weeks and only recently do I feel they are not so severe. What if I persevered through all that insomnia, diarrhea, headache, and lost productivity for nothing?

If I don’t start something else soon, though, I could be covered in redness in a matter of weeks. If I do start another new medication, such as guselkumab that was FDA approved days ago, will that one work? How long might it take?

I’m not sure if I should give Otezla the red light or green light–even if only for a few more weeks.

It’s time to message my dermatologist again to see what he thinks I should do next if my condition doesn’t improve soon–although I already know what he thinks of Otezla. 🙄

 

Insurance Request Denied for Otezla

Today I found out that insurance denied my dermatologist’s prescription for Otezla (apremilast). With so many days passing before hearing I assumed the scrip ran into issues. So, I messaged my doctor to find out what happened over the past ten days.  The dermatology office will appeal the denial, which can take up to 30 days–though I’m told that most likely we will hear back earlier.

How do I feel about the insurance denial? I thought I might feel upset and angry, but I mostly shrugged it off. This insurance company, at least the prescription medication provider, is no doubt accomplishing their goal of wearing me down. They are already in my head. As soon as I received the prescription my first thought turned to whether insurance would approve it. I’m saddened that I would think that first.

Besides indifferent and somewhat sad, I feel mostly tired. For a long time, I’ve preached having a good working partnership with health care providers. I practice what I preach. I can talk to my dermatologist just about anytime about anything. We work closely together to decide on my treatment plan. That’s now not the problem.

How do I have a good relationship with the pharmacy benefits company my insurance contracts?

These issues really are new to me the past few years. From the time of my diagnosis until I took this new job in 2014. I was with Kaiser Permanente. I didn’t deal with insurance issues directly—it seemed if the doctor ordered something, I wouldn’t question if I would get it. Phototherapy, biologics, pills, and procedures were all covered.

I’m not looking forward to the next few days. It feels like each time I call I talk to a different person. All the same, I’m building up the courage to make phone calls to the insurance company this week. When they wanted to deny my Enbrel twice a week—claiming a once a week step down protocol that didn’t work for me—I pushed back hard. I overturned that denial with persistence, clear reasoning, and a calm approach.

Praying that I can keep that same calm, figure out what’s going on, and help the process along. I don’t have to have this exact medication. But I do need to feel some security and confidence that I can reasonably have access to what my doctor and I think are best for my psoriasis and health.