psoriasis

20 Weeks with Tremfya: Read the Instructions! (4th Injection)

On Sunday evening I took the fourth Tremfya (guselkumab) injection out of the refrigerator. As I carefully opened the box the instructions fell out onto the desk. I thought, hey, I know how to inject a syringe subcutaneously, so I don’t need to look at it. But a seed of doubt entered my mind: have I really injected Tremfya correctly?

That question became more urgent as I looked over at the specialty pharmacy receipt. Thank God that my health insurance company pays for this expensive biologic. The receipt shows the cost of one injection at $9,500.65. I joked with my daugher I could just about pay her three-year car lease with one injection. I could pay for a lot of stuff.

I could not afford, though, to mess up this injection.

The First 30 Minutes

What I first noticed about the instructions is how to pronounce “Tremfya.” Next, I wish the cover told me how to say “guselkumab,” but I suppose that is for another day.

Tremfya Instructions Cover

The instructions unfolded in accordian style across my keyboard on my desk. I naturally jumped straight to the first step: “Prepare for your injection.” Basically this step says to take the Tremfya box out of the fridge and let it sit on a flat surface at room temperature for at least 30 minutes.

This is a step I should not be able to mess up. But when I took my first dose the nurse did not let it warm up for as long as instructed. I guess her impatience got the best of her. Or, she didn’t read the instructions. I’m glad I started to, and encourage anyone taking a new mediction to do the same.

Time to Inject Already?

Thirty minutes is plenty of time to scan the rest of the instructions and watch a bit of Netflix. Still, that half hour passed too quickly as I hate injections. Self-injections take that hate to another level. Self-injecting with a syringe, not the hit-a-button pen, takes a bit of skill on top of courage.

I hate injections. Self-injections take that hate to another level. Self-injecting with a syringe, not the hit-a-button pen, takes a bit of skill on top of courage.

After stalling for a few more minutes, I picked my injection site and cleaned it with an alcohol wipe. Then I pinched up a bit of tummy flab. In a “dart-like motion,” I finally inserted the needle at a 45 degree angle into my skin. The needle went in quickly and smoothly, although when it pulled out (it does so automatically when all the liquid is pushed in) a bit of blood welled up on the inject site. Applied pressure with a clean cotton ball stopped that nonsense.

After Injection Reaction

As with the other three injections, I felt a bit light headed after the injection. This time the injection site felt a bit itchy as well. I’ve noticed how my asthma perks up slightly with this medication. So, I took a precautionary puff of rescue inhaler beforehand like I do before exercising. I welcomed the fatigue I feel after the injection as I needed to sleep after a huge day at church.

My other reaction was emotional. I felt a great sense of relief that I could finally inject the next dose of Tremfya. I’m noticing a pattern developing with the eight weeks between injections. The last two weeks before injection I start to feel my psoriasis worsen. Guttate psoriasis especially pops up, especially around my lower back and stomach. That’s when I start looking forward to when I can take my next dose.

 —————–

Follow my Tremfya journey!

Tremfya (Guselkumab) Week One  

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

14 Weeks with Tremfya: What’s Next?

16 Weeks with Tremfya: The Verdict?

 —————–

20 Weeks Later: Other Health Concerns Emerge

I can’t believe that 2018 is already here, and now is in the second week. I feel the same way about Tremfya after finishing twenty weeks and four injections. By the next injection, in March, I will have taken Tremfya for over six months. Another small, but notable, milestone.

In the mean time, I still have work to do for my health. The company that delivers home phototherapy units needs my dermatologist to work out the approval with insurance. He’s traveling so I need to wait until he can fill out the forms. With my atopic dermatitis (eczema) breaking out more than ever, I hope the phototherapy unit, or spring natural sunlight, arrives soon.

With my atopic dermatitis (eczema) breaking out more than ever, I hope the phototherapy unit, or spring natural sunlight, arrives soon.

I also have a lot going on with my eyes. Inflammation is causing the oil glands to clog up. I’m tired of the warm compresses, myriad of eye drops, and supplements I need to take. This whole new routine for my eyes, on top of my skin routines, did get me down today after seeing the ophthalmologist. Thankfully, Lydia drove me to my appointment. Spending time with my daughter lifted my spirits.

Insomnia is yet another area of concern for my health. Itchy eyes and skin, together with an unpredictable schedule and heavy work loads, keeps me up until the wee hours of the night. On most weekdays I can sleep later and go to the office later if needed. But on Sundays I need to be at church early, and often to teach within an hour of arriving. That’s when insomnia really hurts.

Now that I’m in my mid-forties, striving for perfect health feels like something of the past. That just makes me want to focus any good time I have all the more in 2018.


Verse of the Week

A Way in the Wilderness (Isaiah 43:18-19)

I often think of my psoriasis experience as a wasteland experience. At the beginning of the year this passage from Isaiah 43:18-19 speaks to me about moving forward through the hardships.

Every year bring about something new to notice, embrace, and adopt. I’m looking forward to what comes about in the next months in health and life.

“Forget the former things; 

do not dwell on the past.

See, I am doing a new thing!

Now it springs up; do you not perceive it?

I am making a way in the wilderness 

and streams in the wasteland.