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. Continue reading

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Living with Psoriasis, psoriasis

My Last Dermatology Visit: As Good as It Gets?

I couldn’t believe what I read in a letter dated November 21 from Western Health Advantage (WHA), my health insurance provided. They approved my continuation of care request for one more visit in December.

I’d already said goodbye to Dr. M and his team at the November appointment. With excitement, I called the Dermatology department to book my last dermatology visit at UC Davis Health. “I’m sorry Mr. Chang,” she flatly said, “Dr. Maverakis does not have any open appointments for the rest of the year.”

Getting that Elusive Last Appointment

What? After waiting weeks to hear back from WHA I now faced denial at the dermatology office? “You can call back as many times as you want to check for cancelled appointments,” the receptionist told me. They don’t keep a waiting list, but would be fine if I called ad infinitum.

So, I called back a few days later. No appointments still. Another call revealed that the university holidays on the last two weeks of the month hurt my chances of landing that coveted appointment. Then I called WHA about extending the continuation of care. Let’s just say that 45-minute phone call made me want to call back UC Davis to get an appointment in December.

Finally, the receptionist took pity on me. He said he would write my name and number down and give me any cancellations that arose. Sure enough, within a few hours, I booked a 9:15 a.m. on Friday morning, December 15th. Why couldn’t he do that from the start? Anyhow, I felt grateful to have the appointment no matter how I got it.

With this health care system, I’m guessing this is as good as it gets.

Assessing my Skin Concerns

Dr. M understandably wants me to taper completely off of cyclosporine. Tremfya (guselkumabis the key treatment we looked to replace it. This visit happened to coincide with my 17th week on the new biologic.

Check out the new Treatments Tried section with a list of Tremfya blogs.

How would he assess my psoriasis and eczema after using it for four months?

Continue reading

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psoriasis, Psoriasis Treatments

16 Weeks with Tremfya: The Verdict?

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.

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psoriasis, Psoriasis Treatments

14 Weeks with Tremfya: What’s Next?

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. Continue reading

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