Category Archives: psoriasis

Advocacy, psoriasis

Joining NPF on Capitol Hill

Lori and I in Sacramento for California Advocacy Day with the National Psoriasis Foundation in 2017. The NPF produced this graphic for a tweet promoting the upcoming Capitol Hill day on March 20, 2018. 

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Last year I very much looked forward to attending the National Psoriasis Foundation’s Capitol Hill Day in the nation’s capital. Alas, due to inclement weather and subsequent flight cancellations, I didn’t make it. I wrote Not Going to DC After All, But . . . to share my sadness. While I did conference call into a couple of congressional meetings, I missed meeting psoriasis patient and research advocates, as well as congressional staffers, in person.

This year I’m hoping the storms hold off long enough for my flight to land at Ronald Reagan National Airport on Sunday evening. If they do I’ll not only check off another item off of my psoriasis bucket list, but also join in a cause I’ve become increasingly passionate about.

Growing in Psoriasis Advocacy

For years I envisioned myself as a volunteer coordinator for building psoriasis community locally. I joined the NPFs Los Angeles community division a decade ago and started the San Gabriel Psoriasis Support Group meeting at a local Kaiser facility. Although that group did not continue after I moved back to Northern California, I felt the monthly gathering made an impact.

In Northern California the NPF Community Division Manager gave me the vision of establishing a group in the Sacramento area. We hosted More Than Skin Deep and Team NPF Walk events over the past few years. However, during this time I felt the tug to focus more time on writing blogs and on local advocacy.

I attended the first advocacy day in Sacramento a few years ago where the NPF teamed up with the Arthritis Foundation and other groups to support state legislation. Some bills we lobbied for included striking down step therapy, promoting continuation of care, and developing standards for biosimilars.

Before one of the California Advocacy days the NPF called to ask me to represent the organization in support of a bill. I took off a morning from work to sit in on a health committee meeting. I waited for my moment to stand in line and express support for the bill. That day the NPF staffer told me I became a lobbyist.

Recently I joined the NPF’s Western Advocacy Action Network representing California. Next week I’m taking my very amateur lobbyist skills to Washington D.C. for the first time. I didn’t expect to become involved to this level in legislative advocacy, but I see the power of influencing government for the greater good of the patient community.

Travel and Psocial Ambassador Training

Getting to D.C. is a daunting proposition, however. Living on the West Coast has a few disadvantages. One of them is traveling to the East Coast for meetings. Since my first meetings with the NPF Psocial Ambassador group starts at noon on Monday morning, I need to travel on Sunday afternoon.

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With speaking at 9 a.m. and teaching a class at 10:30 a.m. at church, the best flight out of Sacramento for me is in the early afternoon. I already know I will be exhausted with the packing, preparation for the lessons, speaking/teaching, and travel through Chicago’s O’Hare airport. I don’t arrive in D.C. until around 11:45 p.m.

Sunday is my big work day that takes everything out of me. Traveling and two days of meetings will be challenging, especially with the time change.

But it’s worth it. I can’t think of a better way to spend those couple days giving myself to a cause I deeply believe in. I’m also looking forward to meeting the other two dozen plus patient advocates who will attend.

I plan to update how things are going during and after the trip. Definitely looking forward to all those couple days have in store for the Foundation and me.

 

 

 

 

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psoriasis, Psoriasis Treatments

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

March 5th finally arrived–injection day. The time came for the fifth dose of Tremfya (guselkumab) twenty-eight weeks after starting this treatment journey with it in August.

To prepare I carefully laid out the syringe, the instruction booklet, information sheet, a cotton ball, and alcohol wipe on my desk. As I waited for the medication to warm up for a few minutes my thoughts began to wander.

Would I take Tremfya if my insurance didn’t pay for the approximately ten thousand dollars per injection?

Is there any chance for even greater improvement as I go into the second half of a year taking it?

Will any long-term side effects eventually pop up if I take Tremfya over a long period?

As I grabbed the syringe I figured the answers are 1) no–it’s way too expensive, 2) probably not–I’ve probably seen what it can do already, and 3) I hope not–and that scares me to these three questions. I submitted to the fact that I can’t know everything I want to know about taking a new medication even after using it for over half a year.

Thankfully, the needle and medication went under my skin with no issues. Not even a tiny drop of blood emerged as the needle pulled out. Now it’s time to wait to see how effective this injection will be for weeks 28 to 36, and would it follow the pattern I’ve observed with the past couple injections.

The Pattern Continues

In 24 Weeks with Tremfya: A Pattern Emerges I discussed a pattern I observed with the eight week between injections. About two weeks before the next injection my psoriasis worsens. Then two weeks after the injection my psoriasis begins to improve again. I most enjoy the four weeks in between.

During the previous eight weeks I did have a nagging respiratory injection that seemed to worsen both my psoriasis and atopic dermatitis. While it’s possible the break out is due to the lingering effects of infection, I also see it as a potential confirmation of the pattern I described.

This picture I took earlier this week shows how my psoriasis broke out some on my lower back and upper arms. Continue reading →

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Living with Psoriasis, psoriasis, Psoriasis Treatments

An Almost Disastrous First Dermatology Visit

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The empty lobby at the dermatology clinic at lunch time left me feeling quite anxious after I missed my 11:30 a.m. appointment, which I thought was at 1:30 p.m.

Wednesday morning started out quietly enough. I took the morning to rest as I had to work on my Monday day off. I looked forward to my first dermatology appointment at 1:30 p.m. I drove into town around 12:30 to give myself plenty of time. Then it dawned on me.

My dermatology appointment was at 11:30 a.m., not 1:30 p.m.

After double checking my calendar I decided to drive straight to the clinic. Even though the door was unlocked, I only found an “out to lunch” sign on the counter. A call to the scheduling center confirmed I missed my appointment. I’d waited over two months for this visit. Now I found myself one hour late to it.

The scheduler on the phone told me I could take the next available appointment with the dermatologist on May 8th, or with her colleague on May 2nd. She also gave me the option to stay in the clinic office until the staff returned from lunch. I opted for the latter.

As I waited all I could think about is what a disaster the first visit is turning out to be. Being late meant possibly not seeing the new dermatologist for weeks. One little mistake could mushroom into huge consequences for all my treatments.

As I waited all I could think about is what a disaster the first visit is turning out to be. Being late meant possibly not seeing the new dermatologist for weeks.

Awkward Beginnings

Finally, someone returned to the office. I sheepishly asked if she had started working yet, and shared how I felt embarrassed about missing my 11:30 appointment. The receptionist said it was okay, and took my information down. She then asked me to wait until the medical staff returned.

Dr. C’s medical assistant returned and started looking into my situation. He said they could work me into her schedule, but I needed to wait there for up to two hours. Ironically, I ended up getting a 1:45 p.m. appointment, only 15 minutes later than what I first thought. Around 2:00 p.m. the medical assistant called me into the exam room.

I felt anxious changing to a new medical group and system. Right off I felt awkward when I tried to sit on the exam table and asked for a gown.

“On the first visit the doctor likes you to keep your clothes on and sit in the chair,” the assistant informed me. I thought it sounded like rules for a first date, but went with it.

I felt anxious changing to a new medical group and system. Right off I felt awkward when I tried to sit on the exam table and asked for a gown.

Next, he told me the doctor is using an exam recording device that transmits to the Dominican Republic. It apparently helps with documentation so the doctor doesn’t need to worry about writing notes later. I didn’t want to make a fuss on my first visit and told him it would be fine.

Dr. C. walked in a few minutes later. She told me right away that she didn’t have that much time for the visit since I was being squeezed into her schedule.

Having no time to waste, I quickly dove into all my dermatology concerns assuming she could keep up. Continue reading →

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psoriasis, Psoriasis Treatments

24 Weeks with Tremfya: A Pattern Emerges

Twenty-four weeks ago on Monday, August 21, 2017, I took my first injection of Tremfya (guselkumab) to treat my severe psoriasis. That day I witnessed a solar eclipse as I drove to the dermatology clinic in Sacramento. I recalled the day in grade school (February 26, 1979) when the last total solar eclipse occurred in the Northern Hemisphere. That’s around the time when the first psoriasis lesions emerged on my skin.

Over the course of those almost four decades between total solar eclipses I’ve battled severe psoriasis. Sadly, few treatments helped to effectively relieve the inflammation over those years.

I survived messy and smelly coal tar formulations, phototherapy burns, painful side effects of soriatane/etretinate, liver biopsies with methotrexate, rising blood pressure with cyclosporine, and five biologic mediations with injections. Not to mention the strange diets, supplements (I need write about the snake skin powder), alternative Chinese medications, and other unmentionables I tried to “cure” my psoriasis.

Over the course of those almost four decades between total solar eclipses I’ve battled severe psoriasis. Sadly, few treatments helped relieve the inflammation over those years.

Would Tremfya finally be the treatment to eclipse the nagging psoriasis all over my skin?

High Hopes and Expectations for Tremfya

Going into the clinic for my first injection I felt both excited and nervous. All those hopes and dreams of wanting to find “the one” treatment rested in that syringe full of medical innovation. That’s a lot of pressure and expectation on one treatment.

I knew before long that Tremfya would not be the cure I desired, even though it never promised to be one. By week 6 I began to redefine my expectations:

So, I’m lowering my expectations for Tremfya. I do hope this awesome new medication can beat the lowered expectations.  But if it can’t quite climb to the top of that mountain, I’ll take something less. I’ll take less than clear skin. I’ll accept if it needs something other than cyclosporine, such as phototherapy, or stronger topical treatments, to work more effectively at suppressing psoriasis.

Of course, I still hope it clears my skin in a couple months. But if it doesn’t by week seven or eight, I won’t fret about it not doing its job . . . at least not quite yet.

Going into week 21 I’m not fretting about whether or not Tremfya will work or not. Instead, I’m observing a pattern emerge on how it works with my psoriasis. Continue reading →

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