psoriasis, Psoriasis Treatments

2nd Dermatology Visit: Waiting and Delaying Treatments

This time I made it on time for my dermatology appointment. After the first visit to my new dermatologist almost turned out a disaster, I made sure to double check the appointment time. Yes, I needed to make it to the clinic on Tuesday at 10:00 a.m. for this second visit.

You’d think that after four decades of seeing doctors I would feel comfortable at clinic appointments. But in those few minutes I spend with the dermatologist decisions will be made about my health that will impact my life for weeks to come.

With a new dermatologist and healthcare provider system I felt intense anxiety for that appointment. My elevated blood pressure told the same story: seeing the doctor is a stressful event for me. Even so, I overcame my anxieties to closely collaborate with Dr. Carroll on what’s next for my skin treatments.

Getting Acquainted

Thankfully, the doctor visit went much better than I expected. At the outset I spent a couple minutes getting acquainted with Dr. Carroll. I first shared my psoriasis column on Everyday Health, The Itch to Beat Psoriasis with her. I also talked about my volunteer work with the National Psoriasis Foundation. Dr. Carroll shared how she studied under a prominent psoriasis researcher and physician and supported the Foundation’s efforts. She explained her philosophy of putting patients first, even if they are late like I was last time.

I thought the exchange helped to break the ice and develop rapport. I hoped that by sharing some of my life with psoriasis she could trust I knew my skin conditions well enough to input on treatment decisions. I also felt more comfortable that, based on her training and experience, she could manage the challenging case that is my psoriasis and atopic dermatitis.

Besides getting to know a new healthcare system and my new dermatologist, I needed to consult with her on a couple issues looming for my health and skin care.

Tremfya Adjustment

I’m convinced now that the pattern I saw emerging with my psoriasis on Tremfya treatment at week 24 continues. The normal dosing schedule for Tremfya is one injection every eight weeks. By week six or so, however, my psoriasis tends to begin to worsen. It takes two or three weeks after the injection to get back to a more controlled state–if at all.

I would like to try taking it every 4 weeks, but that would double the injections to 13 annually. With a cost of ~$10,000 per injection you can do the math. Every 8 weeks is about 6.5 injections per year, with every 6 weeks about 9 injections.

Follow my Tremfya journey!

Tremfya (Guselkumab) Week One  

3 Weeks with Tremfya: The Waiting Game

6 Weeks with Tremfya: Redefining Expectations

8 Weeks with Tremfya: It’s Working!

12 Weeks with Tremfya: The Third Injection

16 Weeks with Tremfya: The Verdict?

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

24 Weeks with Tremfya: A Pattern Emerges

28 Weeks with Tremfya: Still Working? (Injection #5)

38 Weeks with Tremfya: The Question/Answer Edition

Dr. Carroll thought every 6 weeks sounded reasonable. She explained the process would start by submitting a new prescription for Tremfya to the speciality pharmacy. The pharmacy would request insurance prior authorization before filling the request. She would put in the request, then wait for a denial letter. She then would file an appeal to the denial.

What amazed me is the matter-of-fact way she explained how my health insurance provider would deny the exception request. I don’t want to constantly harp on insurance and their propensity to deny anything out of the most ordinary treatment, but here I am again.

I wish and long for the day when insurance will see me as an individual, and let my dermatologist make the decision as to what would treat my health conditions the best. Until that day we continue to do this dance of request and denial, appeal and denial.

Home UV Phototherapy Dosing

I next wanted to discuss with Dr. Carroll how to integrate my new phototherapy unit into my skin care. At the time of the appointment the manufacturer had already shipped my new home narrowband ultraviolet (NUVB) light panel. Thank God for those who gave to the GoFundMe that netted more than enough for the light panel.

I expressed my apprehension in using the panel due to serious burns incurred in the past. She said she would look up the dosing schedule since her clinic does offer phototherapy. I figured with a home phototherapy unit I could start anytime as long as I kept a good log.

Dr. Carroll messaged me a couple days later to explain that I have a Type IV skin type and the dosing that correlates to. She then backed off the recommended amount so I could ease into the treatments. I’m grateful that she listened to my concerns and adjusted my prescribed light dosing accordingly.

I will write about the unboxing of the unit and update on how the treatments are going once I gather the courage to start using it. For now it sits as a piece of fairly expensive medical equipment furniture in a corner of my bedroom.

As of today I’m waiting on the decision on increasing Tremfya dosage and delaying using my ultraviolet light panel. In the meantime my psoriasis is doing pretty well four weeks after my last injection, but my atopic dermatitis is a bit out of control. Time to wet wrap, and maybe, just maybe, start my phototherapy regimen.