10 Weeks with Tremfya: One Step Back

Two steps forward, and one step back. This saying aptly describes how I feel about my experience with Tremfya (guselkumab) after ten weeks. Overall I see progress. But during these seventy days I can point to a few setbacks.

When I updated two weeks ago I felt great—positive that Tremfya could take on my psoriasis single-handedly. I continued tapering cyclosporine to three 100mg pills a week (instead of my typical three pills per day). Even the atopic dermatitis stayed mostly under control.

But over the past week the psoriasis took a clear step backwards. When I looked at my skin in a full length mirror I could see an archipelago of bumps that recently emerged. When I put lotion on I could feel the hot spots breaking out on my back, legs, and arms.

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Over the past week the psoriasis took a clear step backwards. When I looked at my skin in a full length mirror I could see an archipelago of bumps that recently emerged.

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I felt similar setbacks in the first few weeks, but now it’s later in the treatment cycle. Ten weeks is not the endpoint to improvement with Tremfya, though I didn’t expect to take one step back at this point.

One Part of the Solution

As those lesions grew in both size and number, I became more and more depressed. Setbacks never feel good. I hate hearing how the downward trend is only a pause in a glorious future. As a person who has experienced severe flares, I dwell on the down trajectory becoming an unstoppable spiral downward.

What broke me out of this negative thought cycle? Accepting that Tremfya might only be part of the solution, not a single solution. Monotherapy is a dream I stubbornly hold onto—taking one medication that suppresses psoriasis by itself. No more phototherapy. No more pills, ointments, or steroids. One injection every eight weeks, and that’s it. The recent outbreak also broke me out this line of thinking.

Tremfya can hit clean-up or be the starting pitcher, to use a baseball analogy. But one medication, however strong or targeted, probably will not adequately do all the work. Teamwork means combination therapy—using multiple approaches, and even lifestyle changes, to face down the enemy.

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Follow my Tremfya journey

Tremfya (Guselkumab) Week One

3 Weeks with Tremfya: The Waiting Game

5 Weeks with Tremfya: Biggest Fear?

6 Weeks with Tremfya: Redefining Expectations

8 Weeks with Tremfya: It’s Working!

12 Weeks with Tremfya: The Third Injection

14 Weeks with Tremfya: What’s Next?

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

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Final Dermatology Appointment

This coming Friday is my last with Dr. Maverakis at U.C. Davis Health, Dermatology. My insurance provider approved a single visit referral for the remainder of 2017. Since my next appointment falls on the first week on November, that one will be my last.

I will miss the collaboration and rapport built up with Dr. Maverakis. With more time I would want to continue experimenting with the right combination to treat psoriasis and atopic dermatitis. The ideas we generate at appointments come to fruition weeks or months later. This time, however, marks the end. No more tomorrows to return to see if we should continue a therapy, start a new one, or add one to the arsenal.

It took several months accept this change. The blow will soften if the new dermatologist works with me well. Otherwise I would consider more radical changes such as switching health insurance companies through a change in job status, or entering the Marketplace. No good options there, I’m afraid, but health comes first.

Verse of the Week

Finding Joy in Suffering (James 1:2-4)

One of the most impactful passages on how I view living with severe psoriasis comes from James. This passage came to me during a six-week stint at a psoriasis treatment center in Palo Alto, CA the summer after I graduated from high school.

Almost thirty years later I see the wisdom in allowing life’s circumstances, even the unpleasant ones, to positively influence my heart and character. Nothing’s wasted, I like to say.

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.Let perseverance finish its work so that you may be mature and complete, not lacking anything.

Traveling with Psoriasis

[The view from The Getty Center in Los Angeles, June 2017]

I originally wrote this article for The Itch to Beat Psoriasis on Everyday Health. The editor needed to cut it down by almost half. My enthusiasm for travel apparently could not be contained in under 1000 words. So, I have the full, original article here.

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Last summer my family and I took a weeklong vacation to South Dakota to see the Badlands and Mount Rushmore. Besides waking the family up for the early morning flight, everything went according to plan. We went to lunch in downtown Rapid City, SD to pass the time before checking into the hotel. Then it dawned on me—I forgot my injectable biologic to treat my psoriasis in my backpack in the trunk of the rental car.

I immediately panicked, knowing that it would keep in room temperatures for a couple weeks, but not in a heated car in summer. We ran back to the car, and pulled out my backpack in a desperate attempt to save my medication. Sadly, it was too late—it felt as hot as the air in the car. After a quick call to the medication’s manufacturer I learned I couldn’t use it any longer.

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Last summer’s trip to South Dakota at the Badlands National Park. Unfortunately, I fried my biologic on the first day of this trip, but my skin mostly stayed under control.

In the end that incident didn’t ruin my trip or affect my skin adversely. I took it as a learning experience to not give up on travel, but to continue to refine how I travel. Even after making mistakes like at last summer’s vacation, I still look forward to traveling. Psoriasis need not take those opportunities away from me to see the world.

I do recognize, however, that traveling with a chronic condition like psoriasis takes special preparation and planning. The key principle I apply when traveling is to think about what I do at home for my psoriasis. Then, I take as much of what I do in my daily routine with me on the trip. What works at home often works on the road with some modification.

Scouring online I found some great articles on the topic of traveling with psoriasis in general, including 7 Tips for Traveling with Psoriasis here on Everyday Health. I keep those in mind as I share the process of what I do when traveling.

Preparing for an Upcoming Trip

A successful trip begins with preparation and packing. My before-the-trip routine begin with arranged travel plans so I know where I will be and when, including how I will get there. Once I know the destination and arrangements, I go through a checklist in my mind to make sure I have everything I need for the duration of the trip.

Prioritize Prescription Medications

I put top priority on packing enough of my prescription medication. I often can purchase over the counter items, or even clothes when I’m out of town, but it’s harder to replace my prescriptions. I do carry the number to call if I need medical care outside of my home area. But even if I can replace them, I don’t want to take the time out to do so if I don’t have to.

The last time I traveled to Chicago for a conference I prepared as usual. But the morning of the trip I forgot one of my prescription topical medications on the bathroom counter. Providentially, I keep travel size tubes of the same medication in my backpack. That tube contained just enough medication for the trip.

Redundancy in packing medications is one way I prioritize them when I travel with psoriasis. That in turn means I need to have enough on hand to pack for the trip. Going over my travel plans with my doctor before the trip, ordering prescription refills, and calling my insurance provider to find out what to do if I lose my prescription medication ensures I have what I need as I leave my home base.

Review Daily Routines

When I’m packing, I go over my daily routines from morning to night. In the morning, I use a topical medication, take a pill, and apply moisturizers. Those items go on a packing list. I do the same for the afternoon, evening, showering, and bedtime routines. By going over the daily routine I make sure have what I’ll need for each day.

Store Travel Ready Items

Over many trips, I’ve collected travel size containers, samples, and items that I set aside in a medication tub. Only the items on my list make it in the tub. Before each trip, I replenish medications and toiletries I need for the length of the trip. That tub minimizes the potential for forgetting an essential item, and easily packs in my suitcase.

Pack Everything Needed

I used to worry about over packing. Once I traveled with a friend to Europe to speak at a conference. I packed a large duffle bag with all my medications, moisturizers, and sets of clothes. My friend didn’t need to pack as much. He criticized how much I packed, primarily concerned that those driving us mainly have small cars. I explained to him that I need it to take care of my skin.

I don’t bring huge suitcases for an overnight trip, but at the same time I don’t worry about what others think, or make myself travel with a small bag. If it’s a longer trip, I pack larger moisturizer containers and whatever else I need to feel comfortable. I pack what I need, even if it costs more in luggage fees.

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On the Magnificent Mile in Chicago I found a very tall Abraham Lincoln to take a picture with.

During a Trip

When the trip starts, I need to keep focused on my health maintenance. It’s easy to get caught up in the conference I’m attending, or the national park I’m visiting. But taking the time to manage my health is just as important during travel.

Minimize Vacation/Travel Stress

My family growing up stuck to early starts and long days on vacations. We packed in all we could do each day, wanting to maximize the time and opportunities on the trip. I found vacations more stressful than staying home.

I know stress is a part of travel, but I try to minimize the stress as much as possible as it’s also a trigger for my psoriasis. When I plan a vacation, I schedule rest and late starts whenever possible. Packing early and getting to the airport in plenty of time also minimizes anxiety. I practice mindfulness, prayer, and deep breathing whenever I need to calm down.

Keeping those home routines helps me with stress management as well. On my last trip, I committed to exercise in the hotel gym. Two of the four nights I ran on the treadmill. Instead of staying out longer with new friends, I kept to my regular bedtime. Breaks during the day helped me stay focused and healthy.

Communicate Special Accommodations

A key to a successful trip for me is letting people know my needs and accommodations. If I’m staying at a hotel, I call ahead to ask if they use any cleaning products or fragrances that might irritate me. I also ask about hypoallergenic options for bedding.

From time to time I stay with friends or hosts. I struggled in the past to tell them I need hypoallergenic laundry detergent on bed sheets, or explain that I need a separate bathroom with around 45 minutes to get ready. I’ve found most people understand once I explain my situation.

Moisturize Skin on the Go

I used to wonder why my skin seemed to feel worse on flights. I soon realized that the dry air in the cabin dried out and irritated my skin. I now take a small container of moisturizer with me to use periodically on travel days. I also hydrate as much as possible on planes.

Moisturizing becomes especially important in hot, dry climates. When I visit my parents in Southern California, sometimes the dry Santa Ana winds create low relative humidity. Checking weather reports provides important information for how much skin moisturizing might be needed.

Look Out for Psoriasis Triggers

The National Psoriasis Foundation (NPF), in the article “Causes and Triggers,” states that “Psoriasis triggers are not universal. What may cause one person’s psoriasis to become active, may not affect another.” It’s important, then, to know your psoriasis triggers and try to avoid them—especially while traveling.

Some universal triggers the NPF mentions include stress, injury to skin, and infection. To prevent these and other triggers I apply sunscreen in sunny environments, wash my hands to prevent infections, and protect my skin from damage such as bug bites, or getting scratched.

Mentally Prepare for Onlookers

Summertime is a peak travel time. While I love going to the beach, or taking the kids to an amusement park, I don’t like exposing psoriatic skin in those situations. One spring my daughter and I took a cruise to the Panama Canal with my parents as a relief from the stress of ineffective psoriasis treatments. I needed the break away and the warm climate during the winter, but I was over ninety percent covered in lesions. It took some courage, but I went out on the deck anyhow to relax and catch some sunlight.

Over the years, I’ve learned to ignore people who stare, or ready what I’ll say if they ask about my skin. Explaining it’s not contagious, and it’s an autoimmune condition, helps me feel empowered, and educates others in the process.

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My daughters and I drove into San Francisco to take in the National Psoriasis Foundation Walk and do some shopping. One of my favorite cities in the world, and near where I grew up.

After the Trip Ends

When a trip ends, I tend to experience mixed feelings. I’m glad to be home where I can sleep in my own bed and resume my normal routines. At the same time, I miss the adventure of traveling. I might also need follow-up care for my skin.

The last time I went to a five-day conference my skin did not do well at all. Despite my best intentions and planning, something triggered a flare. The time and effort to calm the flare was an unfortunate consequence of travel, but one I know might occur. Checking in with my doctor, taking inventory of skin care supplies, and allowing for a low-key reentry into daily life also become part of my routine after a trip.

The trip to South Dakota fulfilled part of a bucket list item to visit the all national parks in the United States. I’ve traveled to Africa, Asia, Europe, Central America, and various parts of the country. So much of the world lies unseen and unvisited for me. Traveling gives me opportunities to meet new people, see old friends, appreciate natural beauty, and experience different cultures.

The memories I make on those trips make the extra effort to care for my psoriasis on them all worth it.

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On the Los Angeles trip we also visited the California Science Center where the Space Shuttle Endeavour resides. The family voted this part of the trip as one of the best moments of the week.

 

For some great specific tips on international travel, see International Travel with Psoriasis.

Another Inconvenient Psoriasis Treatment

Tomorrow I have my next dermatology clinic visit in the morning. I’ve been putting off something Dr. Maverakis asked me to do last time: patch testing for any reaction to using coal tar formulations.

When you look at the tar you might understand why I put it off. You can’t smell it, but trust me that it smells like the road after repaving, or the roof after renovations. The La Brea Tar Pits aren’t too far behind. The darker formulation is crude coal tar in Aquaphor, and the lighter one is LCD coal tar in a Cetaphil cream.

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Crude coal tar formulation on my inner arm covered it with gauze. Will my skin react to it?

I’m almost hoping that my skin will react negatively to the tar formulations. The idea of slathering crude coal tar on my body for four or more hours, covered with plastic wrap, doesn’t sound pleasant–at all. I’ll need to go into Sacramento, about a 30 minute drive, three times a week for phototherapy first.

We also need to figure out where I can stay in the clinic as no facilities exist right now for patients doing Goeckerman Therapy. The current bathroom set aside for this treatment to wash off the tar is used as storage. A new bathroom is under construction. I’ll get to check that out tomorrow. I might even get my own office behind the clinic to hang out in my pajamas!

I’m open to trying this treatment as I need a break from cyclosporine. Cyclosporine works great for both psoriasis and atopic dermatitis. But it also has a long list of nasty side effects, including hypertension and kidney concerns.

See my blog on 6 Inconvenient Treatments I’ve Tried for Psoriasis–I’ll no doubt be adding a seventh soon.

 

 

 

 

Not Going to DC After All, But . . .

I will still join the National Psoriasis Foundation‘s Capitol Hill visits remotely! It will be an early call, but I’m glad I can still participate even though I won’t be there in person. A couple years ago I visited the local office of my congressman. I definitely look forward to chatting with John Garamendi’s staff in Washington D.C. too.

The winter storm #Stella unfortunately canceled my flight from Phoenix to Washington DC’s Reagan airport. I found out when I woke up for my first flight out of Sacramento. Sadly, although I knew cancellation was a possibility, it became a reality as I saw the alert in the wee hours of the morning. I’m still in some kind of denial, as I still haven’t unpacked my bags.

I do welcome the rest, though. Last week’s trip to Orlando for the American Academy of Dermatology annual meeting, and a week full of work at church tired me out. Yesterday I spoke in two consecutive church services on short sleep after Daylight Savings Time. My wife rejoiced when she found out I would stay home, worried that I might fly into a blizzard, and knowing how busy I’ve been recently.

This afternoon I finally got around to working on a couple chores I’d put off for weeks: washing the cars, and mowing the lawns. Now I’m spending time catching up on emails and blogging. I spent some much needed time with the kids, too, with my son helping me with the work.

Even though I’m not going to DC, I hope to go next time. And I get to enjoy the 80 degree weather here in Sacramento. It’s disappointing, but not all bad.

The Future of Psoriasis Care

If you could look forward to coming medical innovations in psoriasis treatment and care, what would you want to see?

In my Everyday Health column The Itch to Beat Psoriasis,  I address questions medical innovation, cure and prevention, and what a life free of psoriasis might look like. As always, I’m grateful to Janssen for the invitation, supporting my travel expenses, and putting together a great team for the patient panel.

In the column I did not share how going to San Diego that weekend became quite a journey. The storms in California raged during my travel both ways. Matt Iseman showed up a bit late to our prep meeting, which amped up my anxiety as I hoped we’d have more time to talk about how the panel would be conducted.

The overwhelming consensus from the panel is the need for immediate relief so those living with autoimmune conditions. The impact of chronic conditions cannot be overstated. It’s written on the lives of those who battle everyday.

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I joined Matt Iseman, Brooke Abbott, and Mariah Leach for an immunology patient panel in January

Turns out everything went better than I could have expected. The researches gave us a warm round of applause at the end. Afterwards, I met a couple people who wanted to follow up with what we talked about. The huge storm that hit home even passed just before I landed at Sacramento airport!

All in all a great trip to share the patient story to those who everyday work hard to improve our lives.

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You can read the column The Future of Psoriasis Care here.

Finishing Up at the American Academy of Dermatology 2017 Meeting

After taking a day to familiarize myself with the AAD meeting, I went full force for the next day and a half. I’m not sure how often patient advocates join meetings like AAD, but it definitely was a first for me. Without my guides and support from Janssen I don’t think I would have had such a positive experience.

Here are some of the elements of the meeting I experienced:

Exhibit Hall

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AAD 2017 Exhibit Hall in Orlando with over 400 booths

I took the picture above at the Aveeno booth, which shows me lost in an oat field. I don’t endorse products, but don’t mind sharing that I’ve personally used Aveeno since I was a teenager. I couldn’t pass up the photo opportunity!

The exhibit hall had over 400 booths with companies and organizations showing off their latest products, medications, and services. I naturally gravitated toward the consumer products and medications I use. But I also marveled at all the new medications available for psoriasis and atopic dermatitis. So much is coming down the pipeline, stay tuned.

Scientific Posters and Presentations

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Scientific Posters read on computers and presented in five minute sessionsfullsizerender-jpg-9

In another section of the exhibit hall doctors/researchers presented their scientific posters. I suppose these once were literal posters on a board, but now they are on slides available on computer monitors. I attended about six or seven of these sessions and found out some critical information for my future treatment options.

I liked how these sessions focused on a particular question, had clear conclusions, and did not go on for too long. The psoriasis sessions this morning garnered quite a bit of interest, as did all the psoriasis sessions I attended. Much of it flew over my head, but as a patient I still wanted to know the latest and greatest. It’s patients who can translate the information to other patients–even if we need them translated for us first.

Plenary Session

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The plenary session with Dr. Joel M. Gelfand presenting research on psoriasis and cardiovascular disease

I earmarked the the plenary session as one talk focused on the comorbidities associated with psoriasis. But first I heard the incoming AAD President’s address and another talk on melanoma. The anticipation grew as the psoriasis talk came.

Dr. Gelfand’s work includes research on the role of psoriasis in conditions found in patients. As many patients know, a myriad of conditions, such as diabetes and cardiovascular disease, are associated with psoriasis. We’ve known that those with moderate to severe psoriasis’s life spans shorten some five years. But does psoriasis cause those conditions?

The takeaway for the dermatologist is to check for psoriatic arthritis, educate and screen patients for cardiovascular risks, check for cancer, and give vaccinations like the flu shot. As patients we too should be asking for the same even if the doctor doesn’t order them for us.

Scientific Sessions

Finally, I sat in over four hours of lectures from top dermatologists on various topics related to psoriasis. The symposia had a number of doctors presenting for about 15-20 minutes each. The forum had two speakers who each took half the time.

I don’t have a picture of the scientific sessions as the AAD did not permit photography. Once I saw others take pictures, though, I felt tempted to take some. Even if I did, I wouldn’t show them publicly here. That’s if I did . . .

 

I have many more thoughts about the AAD meeting to sort out and blog about. Look for those in entries to come. In the meant time I’m looking forward to getting home tonight to celebrate my daughter’s 16th birthday.

Finally, I’m extremely grateful that Janssen gave me the opportunity to attend the meeting, and for their awesome support. They started a new psoriasis blogger group called “I Know PsO,” and invited me as a member of that group.

How to Take Charge of Your Psoriasis Treatment

[This blog was originally published on The Itch to Beat Psoriasis.]

I recently spoke with Dave Taylor, director of research at Inspire, a patient engagement company with about 220 disease condition sites. If a picture is worth a thousand words, then Inspire’s communities paint thousands of pictures of people living with a myriad of health conditions, including psoriasis.

The TalkPsoriasis community, in partnership with the National Psoriasis Foundation (NPF), now has over 100,000 members, and is the largest that Inspire hosts.

“These are people who took that first step and turned to the Internet,” Taylor says. “We have a billion words” from members who engage others about their health conditions on the site.

Patient Insights

Last year, I wrote about Inspire’s first annual survey titled “Insights from Engaged Patients.” I excitedly opened this year’s survey to find out what, if anything, changed.

Originally, I wrote about how to become a more engaged patient: advocate for yourself, break down barriers to care, and use electronic resources.

These three still stand out for me after reading the latest report. As an engaged patient, you need to advocate for yourself and break down barriers more than ever before. For example, engaged patients experienced cost issues 65 percent of the time with treatments, 52 percent with other medications related to treatment, and 40 percent from out-of-pocket costs related to travel and logistics.

Cost barriers continue to hit me in the wallet each time a family member picks up medication at the pharmacy or sees the doctor. The co-pays go up each year, while the benefits stay the same or decrease. It’s challenging to stay on top of your own healthcare — to overcome the countless hurdles like costs, insurance, and access. But that’s what engaged patients who live with serious health conditions need to do more than ever.

As for using electronic resources, this year’s survey showed that patients increasingly engage with their healthcare on mobile devices. As Taylor notes, “the number of people who used their smartphone to look for information about their health conditions went from 28 percent to 50 percent this year.”

While I am never far from my smartphone, I don’t use it as much for healthcare as I do for email and messages, checking the weather, or sports scores. In my experience, mobile delivery of health information has come a long way, but still needs improvement.

Taking Medications as Directed

As an autoimmune patient, I scanned the report to see if any data stood out for my group. I learned that “autoimmune and neurologic patients are more likely to have gone without medications (60 percent of patients of each type).” As Taylor says, “You are dealing with chronic, ongoing treatment. The fact that you have to take a medication indefinitely opens the door to adherence and compliance issues.”

Taylor also notes that people with more acute conditions might prioritize those over chronic conditions. I couldn’t agree more. Keeping up with medications is a concern that I’m focused on this year. The report cites side effects (53 percent), cost (53 percent), insurance coverage issues (40 percent), lack of effectiveness (33 percent), and dosing issues (8 percent) as reasons that patients stop taking prescription medications.

These issues are difficult to overcome and need to be addressed in proactive ways. Of course, talking to your doctor about adjusting medication is key. But I get embarrassed to tell him if I’m not following his directions, and I might not want to try the alternative.

Brand Name or Generic Equivalent?

A final observation from the report speaks to brand name and generic equivalent medications: “Oncology patients and autoimmune patients are more likely to not know if their medication has been switched to generic equivalent.”

Often taking a generic equivalent is not an issue. But studies show that the brand name sometimes does make a difference. That’s the case with one of my medications. My dermatologist often forgets to note “brand name only” on the prescription. I refuse the generic, and have the pharmacy call my doctor to approve the brand name.

Do you know if your medications need to be brand name, or if they are switched to generic when you go to the pharmacy? The engaged patient needs to ask that question, at the doctor’s office  and the pharmacy.

The report contains much more information about the engaged patient than I could highlight here. You can view all the survey results here.