20 Weeks with Tremfya: Read the Instructions! (4th Injection)
24 Weeks with Tremfya: A Pattern Emerges
I found this photo online that reflects how I feel–looking up for answers into the gray building and sky, not knowing what’s the next move.
For much of the last year I looked forward to taking Tremfya (guselkumab) to treat my severe chronic psoriasis. My dermatologist suggested I hold off on the new IL-17A inhibitors until it was FDA approved.
I continued with a combination of topical steroids, Enbrel (etanercept), and Neoral (cyclosporine). That regimen worked fairly well for some years. But it seemed Enbrel lost effectiveness over the years, and cyclosporine’s long-term side effects started to develop. A little over 14 weeks ago I finally started Tremfya.
Now almost three months into the new treatment I am asking a question I hoped not to need to ask: what’s next?
Skin Condition Update
I won’t make any final or definitive evaluation of Tremfya’s effectiveness quite yet. Week 16 is when the study trials report efficacy anyhow. Charts show the medication continuing to work for weeks after, even though the curve flattens. I can say that overall psoriasis is under better control than with Enbrel and higher dose cyclosporine.
My arms and legs mostly cleared of psoriasis lesions, although some stubborn spots remain on my thigh and upper arms. My perennial problem areas of the lower back/flanks and stomach broke out after the 3rd shot in week 12. However, those have calmed down some thankfully along with intense wet-wrap therapy (low-medium strength topical steroid covered by wet clothes for a few hours) over the past week or so.
Now almost three months into the new treatment I am asking a question I hoped not to need to ask: what’s next?
My scalp is incredibly itchy, by far the worst psoriasis I have. Cyclosporine worked so well on my head, nails, hands, and feet—body areas that did not respond to much in the past. Tremfya is not doing as well on my scalp, although my nails/cuticles and extremities look as good as can be expected.
The eczema, atopic dermatitis, however is breaking out horribly in cycles. It’s not Tremfya’s fault, but rather an expected result of tapering down on cyclosporine. The wet wrap therapy helps with the eczema the most, although the psoriasis calmed down this last treatment too. The previous treatment oddly flared my skin more. I’m grateful that I’ve had a few days of relative calm.
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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
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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Weighing Next Options
The what’s next question needs an answer soon. To my surprise my health insurance provider sent me an approval letter for yet another visit to my dermatologist at UC Davis Health before the year’s end. Dr. Maverakis is kind enough to work me in on one of his clinic days as he is booked solid through January.
Tremfya is part of the answer, but unfortunately not the monotherapy I hoped for. I am open to adding a home phototherapy unit, pulse doses of cyclosporine (higher doses for a short duration), wet wrap therapy, and the new biologic for atopic dermatitis. I’ll take other suggestions to make a combination that keeps me under better control.
Complementary options I’d consider include a gluten-free diet (tried it once, but was encouraged to try again) and cutting out processed foods, sleep aids like melatonin, oatmeal baths, natural sunlight when spring rolls around, and losing my belly fat.
I look forward to updating with photos at week 16. Hopefully, I’ll have an even better report then!
Verse of the Week
Thanksgiving All The Time (1 Thessalonians 5:16-18)
Over the years I’ve spoken at Thanksgiving more times than I can remember. My favorite verse comes from 1 Thessalonians where the Apostle Paul directs his readers to give thanks no matter what is going on.
The past couple weeks I struggled more than usual with fatigue, long work hours, and unstable skin. As I prepared for Thanksgiving at church, where I spoke to the whole church of over 300, or with my family of five, I thought about this passage:
Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.
PsoHoward 