March 5th finally arrived–injection day. The time came for the fifth dose of Tremfya (guselkumab) twenty-eight weeks after starting this treatment journey with it in August.
To prepare I carefully laid out the syringe, the instruction booklet, information sheet, a cotton ball, and alcohol wipe on my desk. As I waited for the medication to warm up for a few minutes my thoughts began to wander.
Would I take Tremfya if my insurance didn’t pay for the approximately ten thousand dollars per injection?
Is there any chance for even greater improvement as I go into the second half of a year taking it?
Will any long-term side effects eventually pop up if I take Tremfya over a long period?
As I grabbed the syringe I figured the answers are 1) no–it’s way too expensive, 2) probably not–I’ve probably seen what it can do already, and 3) I hope not–and that scares me to these three questions. I submitted to the fact that I can’t know everything I want to know about taking a new medication even after using it for over half a year.
Thankfully, the needle and medication went under my skin with no issues. Not even a tiny drop of blood emerged as the needle pulled out. Now it’s time to wait to see how effective this injection will be for weeks 28 to 36, and would it follow the pattern I’ve observed with the past couple injections.
The Pattern Continues
In 24 Weeks with Tremfya: A Pattern Emerges I discussed a pattern I observed with the eight week between injections. About two weeks before the next injection my psoriasis worsens. Then two weeks after the injection my psoriasis begins to improve again. I most enjoy the four weeks in between.
During the previous eight weeks I did have a nagging respiratory injection that seemed to worsen both my psoriasis and atopic dermatitis. While it’s possible the break out is due to the lingering effects of infection, I also see it as a potential confirmation of the pattern I described.
This picture I took earlier this week shows how my psoriasis broke out some on my lower back and upper arms.
For comparison, here’s a photo I took at 16 weeks. I shared my assessment of using Tremfya at the time in 16 Weeks with Tremfya: The Verdict? The lighting is different (The 16 week photo I took at dusk, while the 28 week photo in the morning), but it clearly shows more improvement at 16 weeks than at 28 weeks.
Sufice to say that my psoriasis severity stays in a range on Tremfya. Overall, though, the this range is a great improvement over other medications I’ve used.
I’d say for certain Tremfya is still working to suppress my psoriasis, although I don’t foresee more improvement outside of the range of severity I’ve observed so far.
Call from My New Dermatologist
Last week I received a surprise call from my new dermatologist, Dr. C. Her medical assistant called me a few days prior to let me know that my insurance denied the doctor’s request for a home phototherapy unit (more on this in an upcoming blog).
Just before the assistant hung up I quickly asked what the plan is to treat my atopic dermatitis if I don’t have the phototherapy unit. She said she’d ask the doctor. I felt miffed at the time as I only heard bad news with no contingency plan.
After that conversation I learned that Dr. C had worked on my situation behind the scenes. She called Dr. M., my previous dermatologist, to consult with him. Then she came up with a plan with contingencies to share with me. I appreciated her willingness to collaborate and make decisions together.
As I shared in An Almost Disastrous First Dermatology Visit, we didn’t get off to a good start. However, after this last call, I’m hopeful for a strong, collaborative working relationship to develop with her over time.
Upcoming Trip for Training and Advocacy
With my fifth Tremfya dose injected, I’m looking forward to a trip with the National Psoriasis Foundation. I missed this trip last year due to a severe snow storm in the Northeast. The three-day trip will take place just as I start week three with this last dose. Hopefully by then my skin will calm down as it tends to flare during travel.
The trip will be a whirlwind. I work at church in the moring, speaking in the service and then teaching a class, before heading out to Sacramento airport. I arrive in the Washington D.C. area just before midnight. In the morning I have Psocial Ambassador training, then Advocacy training in the afternoon/evening. On Tuesday we visit congressional and senate offices, before heading back to the airport.
I’ll be sure to write an update about how my skin does on the trip, as well as my experiences in the nation’s capitol.