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?

As he looked my skin over, he mentioned that Tremfya would not improve my psoriasis much more after sixteen weeks. In other words, what I’ve experienced is about as good as it gets on the medication.

How would Dr. M assess my psoriasis and eczema after using Tremfya (guselkumab) for four months?

I next wanted to know my psoriasis Body Surface Area (BSA). With one palm about one percent BSA, I figured I would land around 5-10%. He precursored his evaluation by saying he needed to take training classes and receive certification on using assessments like BSA. My skin, with a lot of small guttate lesions, is difficult to assess. “Under 10%,” he said with some uncertainty.

IMG_8331
My legs at 16 weeks of taking Tremfya. Good improvement overall!

I started Tremfya with about 15% BSA psoriasis while taking Otezla (apremilast) and higher doses of Neoral (cyclosporine). While I showed good improvement, my scalp, nail cuticles, folliculitis, and eczema continue as concerns.

What’s Next? The Decision is In

In my Week 14 entry with Tremfya I asked the question, “What’s next.” I thought I might need to take something in addition to Tremfya, but we wanted to wait a few more weeks to evaluate. Now at almost 17 weeks we decided I did need something else. “Do you want to try the new biologic for atopic dermatitis, Dupixent (dupilumab), or order a home phototherapy unit?” he asked.

I did not like either option.

Taking two biologics could introduce unnecessary risks with suppressing my immune system. Besides, I doubt insurance would pay for two expensive biologics when they do not want to pay for one.

On the other hand, I experienced trauma with phototherapy about ten years ago. I sustained such a nasty burn from a narrowband UVB unit that it took me weeks to recover from. My skin hurt when I moved, or when I toweled off after a shower. With a home unit, I figured, I could start low and increase exposure very, very slowly.

The final decision? Order a phototherapy home unit.

The final decision? Order a phototherapy home unit. Over the last couple days I submitted my application to the phototherapy company in Ohio. I pray insurance will approve it so I can get started sooner than later.

Goodbye to One of My Favorite Dermatologists

“I’ll see you at the next psoriasis event,” Dr. M said as he left to see his next patient. I waved good bye knowing I would not see him again for what will feel like a long time. After almost forty years with psoriasis and eczema, seeing countless doctors, Dr. M goes down as one of my favorite dermatologist. I will miss seeing him.

It’s easy to wonder if he’s as good as it gets. With his impeccable education, extensive research experience in cellular immunology, and understanding of the complexity of my condition, I imagine I won’t replace him easily.  But other times I felt the same way it turned out okay. “Your next dermatologist will be great,” Dr. M reassured me.

“Your next dermatologist will be great,” Dr. M reassured me.

It’s time to make that next appointment with Dr. C. I hear she is a good dermatologist, and I hope she works well with me and my conditions. Either way, how true it is in life to take what good comes, and by faith keep moving forward.

Maybe that’s a better way to see life’s imperfections however good it gets.