I love visiting my parents in Orange County, California, especially going to the beach. But this last time around my psoriasis flared during the trip and is only slowly calming down.
The anniversary of my first injection of Tremfya (Guselkumab) came and went in late August. In a way it’s a good sign that the time went by quickly, for as the saying goes, I had more freedom and fun while it knocked down skin inflammation. In fact, I can’t get enough of Tremfya.
Why Can’t I Get More?
Soon after starting Tremfya I recognized a pattern that continues to this day: about six weeks into the eight-week injection cycle the psoriasis begins to break out. It’s a thin, red, guttate type psoriasis. I call it a “thousand points of psoriasis” lighting up my skin. Lots of little dots or eraser head size lesions that peel and leave a dark pink to red raw skin underneath.
I call it a “thousand points of psoriasis” lighting up my skin. Lots of little dots or eraser head size lesions that peel leave a dark pink to red raw skin underneath.
I asked Dr. Carroll, my new dermatologist starting here in 2018, if I could take Tremfya more frequently. Ideally, I could get an injection every four weeks, but I asked for every six weeks. Predictably, my insurance denier provider said no. Upon appeal they also said no.
Like a petulant child I thought I could proverbially stomp the ground by appealing until I broke the insurance company down to give out another couple injection a year. But they are stubborn, like I am as a parent. I asked why and they gave me the “there are no studies to substantiate the effectiveness of taking Tremfya more frequently,” and the “FDA approves Tremfya for every eight weeks” so you are out of luck kind of answers.
I get it. It’s $10k for one injection. But that one or two extra injections could make a huge difference in my quality of life. Thankfully, they approved the normal dosage so that my quality of life is substantially improve already.
But wow it would be great to get a little more.
Here is my right arm taken on September 18, 2018 at the end of my eight week Tremfya cycle. Relatively flat, red spots that more peel than flake and not itchy. They tend to start going away a couple weeks after taking the injection.
It Would Be Great for Stress Events
It’s not just that I want to pry the insurance provider’s fingers off of that precious box of Tremfya comes in for selfish gain. I need it for those stressful times I’m working at the church, helping out the family, or madly meeting blog deadlines.
I get it. It’s $10k for one injection. But that one or two extra injections could make a huge difference in my quality of life.
For instance, this past weekend I planned to visit my parents. Instead, I covered for two sick colleagues on Sunday, speaking twice when I should have been on the beach in Southern California. I really don’t mind helping my colleagues out in a pinch. If I have a bad cough I want someone to speak in my place so I can rest. It’s just that my immune system activates and my skin takes a beating with the stress of work.
Family emergencies come up too. The week before I stayed with my parents for a few days as my mom started chemotherapy for advanced stage lymphoma. Something about that trip flared my skin, perhaps the chemicals from the remodeling at their house or the stress of traveling and sleeping on the ground—because of remodeling.
(Don’t tell my mom I mentioned her lymphoma because she said no social media about her cancer. You didn’t hear it from me.)
Follow my Tremfya journey!
3 Weeks with Tremfya: The Waiting Game
8 Weeks with Tremfya: It’s Working!
12 Weeks with Tremfya: The Third Injection
16 Weeks with Tremfya: The Verdict?
24 Weeks with Tremfya: A Pattern Emerges
28 Weeks with Tremfya: Still Working? (Injection #5)
38 Weeks with Tremfya: The Q&A Edition
42 Weeks with Tremfya: Coping with a Skin Flare
Tremfya is much, much harder to get than I imagined
I have a message for Janssen, if you are reading this at all (thanks if you are!):
Please do some studies on taking Tremfya more frequently for those of us who are responding, but not for the entire eight weeks. I know it’s great to only take an injection every eight weeks, but I don’t mind. I used to self-inject twice a week. It’s not a problem. You’ve got a great medication going and all I want is more of it.
Much Thanks,
Howard
This shot of the side of my trunk was also taken on September 18, 2018.
And I Promise to Make It Count
I do want more Tremfya to douse those flares that come from stress or who knows why. But I want to do more good with the extra time and energy too. I have opportunities to speak, write, counsel, mentor, and organize community services and outreach. I’d love to do more. I promise to make it count if I could get more.
Of course, I don’t want to put so much on Janssen, Dr. Carroll, or Western Health Insurance to provide something I haven’t had for most of my life. One year is a long time, but it’s one out of forty for me living with psoriasis. I can still manage pretty well with the arsenal I have. And I can accomplish most of what is thrown at me besides.
But a little boost would still be great.
PsoHoward 