85 Weeks with Tremfya: Finally a New Dosing Schedule

IMG_2640.jpeg

The view from my office during a heavy thunderstorm. A fitting picture of how I’ve felt the last couple weeks with worsening skin conditions.

My how time passes. Almost six hundred days in fact since I started using Tremfya (guselkumab) to treat recalcitrant psoriasis. The twelfth injection three weeks ago held special significance as the first dose at the new every six-week dose schedule. With two extra syringes from my dermatologist I can try out every six-week dosing for about a year.

I figured since Week 24 that if I could take Tremfya more frequently I could avoid the inevitable flare that comes at the last two weeks before I get my last dose. Now with two extra boxes in my refrigerator I could try it out.

Thanks to my Doctor

First of all, I want to give credit where credit is due. My dermatologist, Dr. Christie Carroll, offered two sample injections to me late last year after my insurance provider denied our request for every six-week dosing.

She took the initiative to sign them out to me and wrote a note with my name on them. She mentioned, unfortunately, that she might not be able to give me more samples in the future as she faced pressure to give up samples. I don’t understand all the ins and outs of why she might not be able to get Tremfya for me in the future. But I’m glad that she looked out for me to find a way to try it.


Follow my Tremfya journey!

Tremfya (Guselkumab) Week One  

3 Weeks with Tremfya: The Waiting Game

8 Weeks with Tremfya: It’s Working!

16 Weeks with Tremfya: The Verdict?

24 Weeks with Tremfya: A Pattern Emerges

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

One Year with Tremfya: Can’t Get Enough!


Is My Skin Better with More Frequent Dosing?

The quick answer is not really.

Almost four weeks into the new dosing schedule I cannot say that I notice as much improvement than I expected. I hoped to side step that flare, but it came anyhow. Along with the psoriasis dotting my trunk, legs, and arms, my eczema flared badly as well. I’ve lost sleep, concentration and productivity due to the constant itchiness and irritation.

I can think of a few problems with making any conclusions about the effectiveness of this dosing. First, it’s winter and I’m aware of how seasonal factors influence the severity of my psoriasis. With less sunlight and colder temperatures skin flares become commonplace. Also, viral infections, even small ones, trigger psoriatic flares.

Second, the small sample size. One extra dose does not make a pattern. I cannot extrapolate one point in time to the rest of my upcoming treatments. Third, I’m not sure how well the clinic handled the sample dose. Without a chain of custody, I’m left to wonder if something happened to the dose.

Fourth, other treatments I’m taking might have stopped working, mainly phototherapy and topical steroids. One of the phototherapy doses burned my skin slightly, which can cause flares. I might need to change topical steroids soon as I’ve used the same one for a while now.

I could go on, and you can tell my mind’s working on this concern, but the exercise feels fruitless now. As with any other time with psoriasis, the many factors to account for make a clear assertion about the six-week Tremfya dosing impossible right now. 

I inject the next dose in two weeks. I look forward to seeing how that one affects my psoriasis and mood.

Not (Yet) a Fan of the New Tremfya Self-Injector

I read an article on the PharmaTimes online website reporting news I heard from multiple outlets: the FDA approved Tremfya One-Press. You can read the details here: Tremfya gets FDA approval in moderate-to-severe plaque psoriasis. I assume it is like the Enbrel (etanercept) and Humira (adalimumab) self-injection pens I’ve used in the past.

With Enbrel I started with mixing the medication and drawing it into a syringe. Later pre-filled syringed, then the self-injection pens, replaced the tedious mixing method. However, I lamented the loss of control that came with the pen. The syringe allowed me to push the medication at a slower pace.

The injector pen, however, shot the needle into my skin with a spring-loaded action that pushed the medication out in seconds. I came to dread the popping sound the injector made when I finally found the courage to press the button on top of the pen.

I don’t know if I’ll have a choice or not to keep using the syringe with this new Tremfya One-Press approved.