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 →

Standard
Family, Nature

The Super Blue Blood Moon

The awe-inspiring lunar eclipse this morning from the backyard of our house near Sacramento in Northern California.

I set the alarm for 4:30 a.m. this morning to catch the rare super blue blood moon. A super moon happens when the moon in particularly close to the earth. A blue moon is a second full moon of a calendar month, January. A reddish blood moon comes when the moon is in the earth’s shadow during the eclipse. It’s rare for all three to happen at the same time.

When I heard that the West Coast would provide some of the best views I set my mind to wake up to see it. Little did I know that my son stayed up to catch the whole -rogression from partial eclipse to totality. By 5:15 a.m. the entire family stood in the sub 40 degree cold to look up at the sky to see a sight not seen since 1866.

1517142071_eclipse.jpeg

My son used an iPhone camera in the eyepiece of our Celestron telescope to take the photos. We defintely need a better set-up for photos, but the pictures still looked amazing. Here’s a picture of the partial eclipse. Continue reading →

Standard
psoriasis

My Surefire Skin Trigger

The last few weeks I’ve lived with one enduring fear: catching a cold or flu from all the sickness around me. The flu has hit my area hard, including my church and workplace, to the point I didn’t even want to leave my house.

I try to avoid getting ill mainly for one reason–it’s a surefire trigger for my skin conditions.

A Lifelong Skin Trigger

My very first major break-out of guttate psoriasis came on the heels of a strep throat infection I sustained as an eight year-old. My body became quickly covered with those drop-like red sores characteristic of guttate. I remember lying on the ground of the living room, overheated, crying as the fever and skin sores overran my body.

The last few weeks I’ve lived with one enduring fear: catching a cold or flu from all the sickness around me.

The infections came more often when I started immune suppression therapies such as cyclosporine and biologics. I know it’s difficult to say that a certain medication caused me to contract certain infections, but that’s an observation from my experience.

Bacterial infections such as strep throats, ear infections, and staph on the skin all flared my psoriasis and eczema. Viral infections, such as flus and colds, did the same.  About four years ago I contracted Influenza A. The respiratory viral panel confirmed I had an H3N2 virus. I can’t remember ever feeling so poorly with a viral infection. Tamiflu didn’t help much either. And boy did my skin break out with vengeance. It took weeks to calm that flare.

Whenever a fever hits with an infection I know my skin wil break out not too long after.

This time around seemed milder than others, though. The fever stayed low-grade for about twenty-four hours. Sure enough my skin broke out. I took a photo of my stomach to show how this characteristic guttate-like psoriasis looks when I get it.

IMG_8406.jpg

January 20, 2018. Psoriasis broken out on my stomach after a viral infection with a mild fever.

Sadly, I fear my skin will worsen yet as I took the photo just a day after the fever broke. Calming the flares from these infections can take a couple weeks or more depending on what other factors might be involved.

Living with Skin Triggers

Of course, the moral of the story is to avoid psoriasis and eczema triggers at all costs. But sometimes they can’t be avoided, especially during one of the worst cold and flu seasons we’ve had in many years. I washed my hands, tried not to touch my eyes or nose, and avoided touching certain surfaces such as doorknobs in public. Still I contracted a virus.

Of course, the moral of the story is to avoid psoriasis and eczema triggers at all costs. But sometimes they can’t be avoided.

Living with skin triggers is a fact of life, unfortunately.

I know, however, that this flare won’t last forever. Once the trigger is removed my skin will eventually start to improve. That fact does give me a measure of comfort. I do wish, though, I had that home phototherapy unit, or stronger natural sunlight, to help calm this flare. A wet-wrap with topical steroids could help also. I don’t want to do the wet wrap quite yet as it cools my body for a few hours. I’m still recovering from my viral infection.

I would love to hear from you! Do infections trigger your skin conditions? What do you do to lessen their impact?

Standard
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 →

Standard