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.
The Pattern: How Tremfya Works with My Psoriasis (So Far)
The pattern I see with Tremfya on my skin is a 2 week–4 week–2 week cyclical pattern over the eight weeks between injections. I need a couple more iterations of this cycle to truly confirm it, but so far this pattern holds up. [Recall that the dosing schedule consists of the first injection at Week 0, a loading dose at Week 4, then every 8 weeks thereafter (Week 12, Week 20, etc.)]
The pattern I see with Tremfya on my skin is a 2 week–4 week–2 week cyclical pattern over the eight weeks between injections.
About two weeks before my next injection (weeks 6 to 8) I notice those smaller guttate psoriasis lesions pop out on my stomach and back. Other areas also begin to worsen, including my legs and hands. Around that time I want to add cyclosporine for a few weeks. That’s when I know I’m starting to feel more discomfort on my skin.
I excitedly look forward to injection day when I can begin to hope for relief again. It does not come, however, immediately after the injection. Over those first two weeks after injection I’ve been wondering if it will kick in again, or if my skin will continue to worsen.
This last time, though, I began to trust the pattern during the second week after injection, especially since my psoriasis flared after having a twenty-four hour fever. Sure enough at about week three after injection my psoriasis began to clear up again. I stopped thinking about cyclosporine, and looked forward to better days ahead.
During the middle weeks from week 3 to week 6 I experience calming inflammation with my psoriasis. The lesions do not clear out completely (I wish!), but they thin out, lighten up from red to pink, and provide me an overall less itchy existence. Currently at Week 20 I’m in the middle of this cycle, experiencing the better weeks with Tremfya, although it’s not doing much for my scalp psoriasis.
If the pattern holds up, in about two weeks I’ll see my psoriasis worsen again.
I cannot take full credit for identifying this pattern. My dermatologist told me before I even started on Tremfya that he felt the duration between injections would be too long for his patients. Turns out I’m one of them.
My dermatologist told me before I even started on Tremfya that he felt the duration between injections would be too long for his patients.
(Note: If anyone from Janssen is reading this, can you find a way for me to get Tremfya every 6 weeks instead of every 8?!?)
Other Health Concerns
In the mean time, I’m experiencing inflammation in other ways not suppressed by Tremfya. The opthatlmologist diagnosed me with inflammation in my eyelids (blepharitis) due to clogged oil glands (a.k.a. Meibomian gland dysfunction, or MGD). I’m told this condition is associated with skin conditions like psoriasis and eczema. I experience blurry vision, stinging eyes, and eye discharge with this one.
I’m also facing unstable atopic dermatitis. I do wonder if Tremfya helps my eczema some or not, as it’s been much worse in the past. I’m still waiting on that ultraviolet phototherapy home unit to be approved by insurance. With the spring-like weather in Northern California (mid-70s Fahrenheit in the afternoon), though, I might just get my light the natural way anyhow.
Now if only all these health conditions, including psoriasis, can be cured by the next total solar eclipse in 2024!