Category Archives: psoriasis

psoriasis, Psoriasis Treatments

So What If My Skin Clears?

This morning I gulped down the first Otezla pill of the third week of treatment. Given the intense side effects from pill one, I consider two weeks and 27 pills a milestone. We’ll celebrate with steaks on the grill for Memorial Day barbeque in a few hours.

First, though, I’ve begun to contemplate an interesting question: what if my skin is clear, but I’m still experiencing all these side effects? Would I still take it?

Adverse Effects versus Effectiveness

I assumed all along that Otezla’s side effects would decrease over time. Others testify to the lessening of diarrhea and headache around week 2 or soon after. Last week, while still challenging, overall I felt better. The headache, wheezing, and stomach upset hit within one hour after taking the pill. But after about five or six hours I feel a bit better rather than those horrible effects lasting the whole twelve hours.

I felt better enough to be more productive at work this week, although at a slower pace with more breaks. Yesterday, I spoke for fifty minutes at church, led a two-hour counseling session for a couple, and attended another couple meetings. I felt a great sense of relief just to make it to the end of the day.

Despite  this progress, if the side effects plateau at the current level and I can’t mitigate the effects some other way, even if my skin shows marked improvement, I’ll probably stop taking the medication.

Out of Sight, Out of Mind

I’ve taken a medication, cyclosporine, off-and-mostly-on for a number of years now. I don’t feel any side effects from my moderate dose. But my blood work tells me at a higher dose my creatinine levels increase, indicating potential damage to my kidneys and kidney function. Also, my blood pressure goes sky high. Since I can’t feel these effects, they are out of sight and mostly out of mind.

Cyclosporine is hands down the most effective medication I’ve taken for my psoriasis. It’s also one of the most toxic. I’m much more willing to take it, though, since I place a high value on my ability to function and be productive–not just live.

Right now with Otezla I can function at about sixty-percent, but otherwise I’m a blob resting on the couch. I still get out to run or walk, but I often feel horrible while working out. If I can’t exercise or eat, then isn’t that negatively impacting my health too?

Either/Or–Forget It

I just might find myself at this crossroads very soon, needing to choose to stay with Otezla while feeling not so great, or to embark on another new medication journey. Cyclosporine is off the table for a while so my kidneys can take a break. Other options could present themselves too.

This either/or option doesn’t fit my preference profile at all. I want to stop feeling adverse side effects, have assurance of little hidden impact on my internal organs, and have it be the most effective treatment possible. I suppose if I found that medication I wouldn’t need to keep searching for a new medication!

So, for at least today, I’m going to stop thinking about it.  Forget it. It’s not a choice before me quite yet. It’s a holiday, and the family will be together with kids home from school. Besides, my head started hurting half way into writing this blog from my first third week dose.

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psoriasis, Psoriasis Treatments

Why I Hate Taking a New Medication

A little over a week ago I received the news that I would receive a somewhat new psoriasis medication, apremilast (Otezla), direct from the manufacturer. At first I felt a sense of relief that the battles with insurance over covering it came to an end. Then I faced the prospect of taking the medication. A feeling of dread overcame me.

I say I’ve tried every psoriasis medication there is to try. Of course, that’s not completely true, especially with some obscure ones left untried, and more coming out all the time. Over the past few years I’d given up on trying the new ones since my current treatment worked fine.

But it’s time to take a break from cyclosporine, which has a long list of side effects and an FDA limit of one year of usage at a time. That means a new medication.

New Medicine, Same Old Story

I have the memory of an elephant when it comes to how well I felt and did on various medications. Methotrexate makes me want to vomit (still). Adalimumab (Humira) gave me horrible eczema rashes (though cleared psoriasis). Soriatane made my palms and soles of my feet peel so painfully I bound them to survive. Narrowband UVB (phototherapy) burned my skin to where I couldn’t put on clothes without feeling pain.

Apremilast is on the list of haven’t tried, might want to because it’s for psoriasis after all, but I’ve heard and read the stories of the side effects. The pharmacist who counseled me over the phone also described patients she knows with GI issues (diarrhea, vomiting, nausea), headache, insomnia, weight loss (yes!), and depression (no!). The list is not comprehensive, but certainly some of the side effects a patient on this new medication might experience.

Every new medication I’ve tried has the list of warnings, side effects, and potential drug interactions and concerns. Do I want to take that medicine? Not on your life. But I pop that pill hoping that I might be the exception—works super well for me without side effects.

I can dream, anyhow. I can be the one to prove my doctor wrong, who reluctantly prescribed it to me, adding, “It’s a horrible medication.”

Every new medicine I’ve taken I’ve had that same thought, but so far it’s the same old story. I’m human, other humans who took this drug felt X and Y, and I’m feeling X and Y times two.

Stopping this Medication. . . Just Kidding

Today I had enough. Enough of feeling horrible with headaches, bloating, wheezing, and inability to focus. Enough is enough. I’m going to stop taking it, at least the morning dose so I can be a productive person again.

Then my dermatologist messaged me to try it for two months. I hadn’t told him I would take a break this morning—how did he know? He went on to say that the noted side effects improve over time for many people.

As ten o’clock rolled around, I stared at the pills thinking, maybe, just maybe, the side effects will get better if I keep going. Don’t give up so early, I told myself. I can fight through the pain, I coached myself. With a sense of reckless abandon, I grabbed my morning coffee and gulped it down.

Why Did I Just Do That?

As I rushed off to work to counsel a university student, all I could think was, “Why did I just do that?” I could feel the headache and nausea coming on within the first thirty minutes. I needed a time machine to turn back the clock an hour, and fast. Unfortunately, I couldn’t find it.

When the student arrived, I asked if he could wait for a few minutes. I needed to go to the bathroom. Ugh. At least this bathroom need didn’t happen when I gave a talk last Friday. But what about tonight when I lead a group meeting, or on Sunday when I speak again?

This is no way to live.

 

I do hate taking a new medication for all kinds of reasons, principally side effects. If this medication doesn’t do much to stop my psoriasis, the temptation toward indulging bitterness and rage might emerge stronger than ever. Another reason to hate the new medication—it might be a lot of cost and pain for little effectiveness and gain.

But still I take the new medication, because maybe, just maybe, this is the one to clear my skin with less overall side effects.

I can dream, anyhow.

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psoriasis

My Surprising Takeaways from the HealtheVoices Conference

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I’ve come to know and truly appreciate the dedication and hard work of these psoriatic online advocates. I’m glad we spent a few days together in April in Chicago for meetings. From left to right: Todd, Sabrina, Alisha, Summer, Lori Ann, Jim, Ya Hsin, Me, and Huy (kneeling).

HealtheVoices is an incredible conference for online health advocates. I’ve been blessed to participate in the conference for all three years, serving on the advisory panel last year. This year I went wondering what I might learn this time around.

The conference is like drinking from the proverbial fire hydrant. I came away from the Facebook seminar thinking I needed to put much more effort into my Itch to Beat Psoriasis FB page. Other sessions I came away feeling like I needed to write a book, read more articles, or get more involved in legislative advocacy.

Then I went to the YouTube session amazed at how video is taking the world by storm. I generally don’t like to make videos, but I’ve done a few and am open to make more for psoriasis advocacy. I immediately messaged my family asking if I should start a YouTube channel, and if they would help me.

They ignored the request at first. Then a couple of them nicely, but firmly said no. Not that they didn’t want to help me, but that I already have enough on my plate to keep up with. They didn’t think I needed to add something new at this time. I needed to hear that.

As I flew back from Chicago to Sacramento these two themes resonated with me: appreciate what I have, and be open to change.

Appreciate What I Have

Since the first HealtheVoices conference in 2015, I began to get involved in psoriasis blogger groups and advocacy opportunities. Prior to that time I didn’t check emails to join pharmaceutical meetings, or meet-ups with other psoriasis advocates. Once I started saying yes to invitations, I became part of a vibrant community of online advocates.

Seeing other advocates, especially those in the psoriasis community, became a major motivation for me to go to HealtheVoices. Janssen began sponsoring the I Know Pso group late last year. The day before HealtheVoices would be our second face-to-face meeting. Since I attended the American Academy of Dermatology meeting in Orlando, I spent some time leading a session on my observations in the I Know Pso meeting.

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The I Know Pso psoriasis blogger team met at the Swissotel in Chicago on April 20th, the day before HealtheVoices17 started. I led a session sharing my observations from the American Academy of Dermatology conference in Orlando in March.

I’m grateful for the I Know Pso group, as well as other groups that gather and advocate together for psoriasis related causes. I want to do well in keeping up relationships there and building into those teams and groups.

I also enjoy writing best. While I have a Facebook page, Twitter handle, and even a mostly dormant Instagram account, I prefer blogging. Writing for different sites and organizations gives me the opportunity to practice my art creatively based on the mission and individual needs of each one.

Besides advocacy, I have a wonderful family with three children who still need their dad day-to-day, and a church that depends on their pastor from week-to-week. I have a full life that I came to truly appreciate at HealtheVoices.

While I would love to do more of this or that, I left the conference content with what I do have.

Be Open to Change

At the same time I realized that I need to change. The Everyday Health VP Editorial Director, Amy O’Connor, led a workshop on “Mobile-Gedden.” The story board contains the original title, “Storytelling in a Mobile World.” The takeaway for me is that people look at content on mobile devices more than ever before. That means optimizing content for those who are on the go.

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Amy O’Connor, the editor ultimately overseeing my Everyday Health blog, led the Storytelling in a Mobile World session, which she renamed “Mobile-Gedden.” The story board is a great example of the art work created real time during each session.

That session opened my eyes to the changing world. In the old days (well 10 years ago anyhow) I marveled at how I could get into someone’s living room through their computer screen. Those with a stigmatized and visible condition like psoriasis, I figured, might not go to a support group or go out of their way to meet with others with psoriasis. But they might read a blog and connect to a person like myself sharing my experiences living with psoriasis.

The paradigm shift is to think about going with people to the doctor’s office, shopping, or the gas station. I resisted that change, still thinking about the living room. But the session, and the conference as a whole, challenged me to be open to going where people are.

This idea of adapting to change is a theme for my life. As a middle ager (I can’t believe I’m almost 46!) I’ve begun the march back toward nostalgia. It’s not that I don’t see changes or what’s coming, it’s that I don’t like it. But I’ve dedicated my life in the service of others. Why would I not be willing to go where they are?

I’ve had some distance from the conference held April 21-23. Life didn’t slow down much for me, but I did stop long enough to appreciate all the great people and opportunities in my life. I challenge myself to adapt and change each day.

I came away from the conference less with new found ideas and initiatives, and more gratitude and rededication to serve others the best I know how.

Thanks to Janssen for sponsoring HealtheVoices 2017, including covering my travel and conference expenses. All thoughts expressed here are of course mine.

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Personal Faith, psoriasis

Great Easter Week—My Skin Not So Much

As I look back on Easter week, starting with Palm Sunday, I’m amazed at how much happened. In the span of two Sundays I spoke five times: twice on Palm Sunday, once on Tuesday, Good Friday, and Easter Sunday. I led a few meetings, including a leadership gathering with about twenty attending.

The Good Friday service had around 250 in attendance as I worked together with a Mandarin translator for the thirty-minute talk. To top off the week I baptized a college student whom Lori and I worked with over the last couple months.

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Speaking on Good Friday at Davis Chinese Christian Church with Shirley, my Mandarin translator. Around 250 attended our service this year.

Easter week overall turned out great. True, Lori and I struggled through some roller coaster discussions about issues we face. But by the end of the week we felt much better about most of the concerns.

Unfortunately, though, my skin did not do so well. I’ve enjoyed relatively stable skin. I don’t mind it getting a little worse, then a little better, if I don’t feel the lesions getting too inflexible, large, inflamed, or itchy. But by the end of the week they did all the above—along with a few new friends who popped onto my skin to join them.

Stress (EH blog) is no doubt the key culprit. Here are some ongoing stressful aspects of my life I feel are contributing to my skin flaring:

Upcoming Conference: Besides Easter week responsibilities, I prepared to head out to the HealtheVoices conference in Chicago. The first day I’ll meet with members of “I Know Pso” group sponsored by Janssen Pharmaceutical. The organizers invited me to share about my experience at the American Academy of Dermatology after breakfast. And I thought I had a break from speaking!

Flying: Travel itself stresses me. I’m trying to analyze why I feel anxious on airplanes. I fly quite a bit, but each time I feel my shoulders tighten up, my breath become shallow, and my heart beats just a bit faster than usual. I don’t sleep well the night before either. My wife thinks it’s the anticipation of the trip, which I agree with. But it’s possibly the fear of dying on the plane too—however irrational that might be.

Leaving Family: I don’t like leaving my family either. Lydia continues to recover from her bipolar episode in January. Lori needs to do double duty on driving kids to school, cooking, and housework. I wonder if all the little things I do around the house, like checking doors and lights, will get done. I miss my bed and pets when I travel.

Social Anxiety: Even though I work with the public and people all week, I do a get a bit of social anxiety going to these conferences. It’s another world to me—the world of patient advocacy and healthcare. I need to shift gears quickly to engage a different group on a different level.

Lack of Rest: At this point I’d rather take a day or two to rest rather than dive into a five-day trip. To take these trips for patient/psoriasis advocacy, I usually need to take vacation days from work. To minimize disruption to my work, I work on my day off and on the trip. Sometimes I don’t get a day off for a couple weeks. With a heavy workload and travel, I easily start feeling frazzled.

None of the above is great for my skin and health, but I hope it’s a temporary effect. I hope to keep up my exercise routines at the conference, and keep up with good eating and sleeping habits. I won’t miss a Sharks playoff game either! The time difference allows me to watch in the evening after dinners are finished.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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