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.
In the July photo, where my psoriasis is the worst, I am still taking a higher dose of cyclosporine with Otezla. I didn’t think I would see that much improvement from week 8 to week 16, but the photo pleasantly surprised me. I think I lost a bit of weight too!
Follow my Tremfya journey!
What side effects have I experienced with Tremfya?
The Verdict: Not much. After the initial injection I felt some dizziness, blurry vision, and headache. I’m glad my wife drove me to the clinic that day do I didn’t need to worry about driving after the injection. After injections two and three I felt the same wooziness, but to a lesser degree. I slept off the effects after each injection.
It’s still somewhat early, but I haven’t experienced much fatigue since after the first shot. I also don’t see any increase in infections that one might see with suppressing the immune system in this fashion.
For now, I can say that no adverse effects would cause me to consider stopping my Tremfya therapy.
Of course, it could take years before we know the full long-term effects of these biologic therapies. For now, I can say that no adverse effects would cause me to consider stopping my Tremfya therapy.
How am I feeling about Tremfya?
Mostly satsified. I’m not clear, which I considered possible given the clinical trial data and hype around Tremfya. However, I won’t complain about any remaining psoriasis on my skin. I also don’t know if more improvement might come over the next weeks and months.
I did notice, though, that my psoriasis flared some prior to injections. My dermatologist complained about the dosing interval being too long from the get go. Now I would love to see if an every six week interval might work better for me.
I really shouldn’t complain about any remaining psoriasis on my skin. I also don’t know if more improvement might come over the next weeks and months.
Since I don’t think insurance will pay for every six week dosing, I probably will need to add something else to Tremfya and topical steroids to keep the psoriasis under control. I made a similar argument for taking a double dose of Enbrel each week, which insurance did finally cover. But i’m not sure if I or my doctor could make a similar argument for an increased Tremfya dosing schedule.
Will I continue taking Tremfya?
Absolutely! (if insurance covers it). One out of two patients taking Tremfya were rated as cleared at weeks 24 and 48 in North America analysis. Even if I am not clear, but stay at my current level of insurance at week 16, I’m more than glad to continue using Tremfya as it appears to show efficacy for much longer.
Unfortunately, I know there’s a small chance my new dermatologist won’t keep me on it, or that my new medical group won’t cover it. I feel it’s a small possibility, but I’ve been wrong before with insurance.
So, I’m praying that it’s covered by the new provider with my current insurance, my dermatologist continues the care that’s working, and Tremfya remains safe and effective for me. Most of all I pray that I find contentment and peace no matter what happens next.
Next dose (#4): January 8, 2018
Verse of the Week
Making the most of every opportunity (Ephesians 5:15-16)
I can’t believe the end of 2017 is almost here, and that sixteen weeks have passed since I started Tremfya. I often think about what I’ll do if my psoriasis cures or remits. Now that my psoriasis appears relatively clear on a great new treatment, what will I do with my life and time?
My reflection for the end of the year comes from Ephesians 5 where the Apostle Paul directs his readers to a sense of urgency:
15 Be very careful, then, how you live—not as unwise but as wise, 16 making the most of every opportunity, because the days are evil.
As 2018 soon arrives I hope to live with more purpose. Specifically, I will ask the church to give me more time to write books, spend time with family, and rest. Still working on the details, but that’s the plan.