new guidelines for diagnosing plaque psoriasis

The Heartbreak of Psoriasis

Image by tomswift46 (No Groups with Comments, no graphics,f via Flickr

This press release just came across my email (and props to the NPF for sending out press releases that are actually awesome; it makes my little journalist’s heart so happy.)

National Psoriasis Foundation releases consensus guidelines for treatment of plaque psoriasis 

PORTLAND, Ore. (January 25, 2012)—To assist the millions of Americans living with psoriasis, the most common autoimmune disease in the country, the National Psoriasis Foundation published the most recent guidelines in the United States for the management of plaque psoriasis—the most prevalent form of the disease, affecting roughly 80 percent of people with psoriasis.

The consensus guidelines from the National Psoriasis Foundation Medical Board, adapted from the Canadian Guidelines for the Management of Plaque Psoriasis to reflect U.S. practice patterns, aim to clarify when to use oral and biologic medications for people whose psoriasis is beyond topical treatment. A table summarizing the latest research and thinking on eight drugs provides data on when and how to best use them in a way that has not been done before.

“It’s a bold table in that it says directly which treatment will work or which has little evidence to support it,” said Dr. Sylvia Hsu, a member of the Psoriasis Foundation Medical Board. “It spells out clearly in one or two sentences which method is safer than we previously thought.”

One example is the recommendation that cyclosporine, an immunosuppressant drug taken orally, may be used as a short-term solution for up to 12 weeks, although FDA guidelines allow its use for up to 12 months.

The new guidelines also state that ustekinumab, commonly known as Stelara, is safe and effective as a first-line therapy. Previously, its use has been limited to second- and third-line treatment.

To view the guidelines and table, visit www.psoriasis.org/new-treatment-guidelines.

###

About Psoriasis

Psoriasis is the most prevalent autoimmune disease in the country, affecting as many as 7.5 million Americans. Appearing on the skin most often as red scaly patches that itch and bleed, psoriasis is chronic, painful, disfiguring and disabling. Up to 30 percent of people with psoriasis develop psoriatic arthritis, a related joint disease. There is no cure for psoriasis.

About the National Psoriasis Foundation
The National Psoriasis Foundation is the world’s largest nonprofit organization serving people with psoriasis and psoriatic arthritis. Our mission is to find a cure for psoriasis and psoriatic arthritis and to eliminate their devastating effects through research, advocacy and education. For more information, call the Psoriasis Foundation, headquartered in Portland, Ore., at 800.723.9166, or visitwww.psoriasis.org. Follow the Psoriasis Foundation on Facebook and Twitter.

year in review

Ah, yes, the staple of blogs, newspapers and radio shows everywhere: the year in review post/article/show.

2011 was a pretty good year for me, overall, so it’s good to look back at where I was then before considering how I want to make 2012 even better.

january.

I had just restarted Enbrel and was starting to feel better after the horrible slow decline of 2010. I got a promotion at my job (wahoo!), and my new reporter started. I was feeling pretty optimistic that things would be awesome.

february.

I fought the winter blahs and got an IUD. I got mad at people’s assumptions. I fell back in love with journalism, despite its potentially negative impacts on my health.

march.

I went ice skating—and learned to accept my limitations.

april.

I started the Health Activist Writers Month Challenge. I participated in the Walk to Cure Psoriasis. I was named a top 40 arthritis blog!

may.

I was incredibly busy with work, as summer events started rolling in and school events kicked into high gear before the end of the year. The mister and I painted our living room a lovely, bright blue.

june.

I traveled up to Washington, D.C., to visit friends and—best of all—present in and soak up the National Psoriasis Foundation’s volunteer conference! The mister and I celebrated three years of marriage. I set up a Facebook page for the blog.

july.

I had a bit of a nasty flare. I sewed my first garment. I turned 27.

august.

I got sucked in to Dragon Age: Origins (for the first time, anyway). I felt pretty (when they turned out the lights).

september.

I remembered 9/11. I worked Invisible Illness Week.

october.

I looked back on seven years with psoriatic arthritis. I posted my measurements for World Arthritis Day. Halloween! Real Thanksgiving! The mister and I visited my folks at their new home for the first time.

november.

I wrote a letter to my 18-year-old self. I started and didn’t finish National Health Blog Posting Month. I cooked my first vegan Thanksgiving.

december.

I worked an insane amount of hours, dropped off the face of the earth blog-wise, celebrated Christmas, joined the Christmas choir at my church, drove up to visit my parents and so much more. It was an action-packed month.

Whew! What a year. Peace out, 2011. Here’s to hoping 2012 is even better.

move to improve

Today is World Arthritis Day, and this year’s theme is one I definitely need to take to heart: move to improve. I know that’s advice I need to take to heart. I work at a computer most of the day, but I’ve been trying to incorporate getting up and moving—even if it’s just for a quick walk around the office—into my days.

Still, I can do much better. I need to get back in the habit of working out again and not let my insane schedule talk me out of being healthy. But here’s what my good friend and yours HHS Secretary Katherine Sebelius had to say about World Arthritis Day:

Today is World Arthritis Day, a perfect time to get the word out to friends and loved ones about some of the simple steps that you can take to prevent and manage arthritis. Almost all of us know someone dealing with arthritis. Today, one in five adults suffers from the condition. Each year, it leads to more than 40 million outpatient visits and roughly one million hospitalizations.

Beyond the painful human costs, the disease also carries a high economic price tag: $128 billion annually in medical expenses, lost earnings and reduced productivity. The good news is that arthritis is not inevitable or untreatable. For osteoarthritis, the most common type of arthritis, prevention is possible. Relief is available for many forms of the disease. And more promising treatments are on the horizon.

The theme of this year’s World Arthritis Day is “Move to Improve”. That is because one of the best things you can do to manage arthritis is to simply get moving. Physical activity is good for your body. It decreases pain, improves function, and delays disability. Even a small amount of extra activity around the home can make a big difference for your health.

That’s why we in the Obama Administration are supporting community efforts across the country to promote active lifestyles. And it’s why as part of the Affordable Care Act we made a historic investment in preventive care for seniors.

To learn more about new benefits for people dealing with arthritis, visit Healthcare.gov. And for tips on what you can do to prevent arthritis and how you can get involved in finding ways to conquer the disease, visit http://www.cdc.gov/arthritis.

Together, we can reduce the pain and suffering that arthritis causes for millions of Americans every day.

This couldn’t come at a better time. A recent National Psoriasis Foundation surveyfound one in four people with psoriasis may have undiagnosed psoriatic arthritis. That is insane. If you have psoriasis—heck, even if you don’t—

and you have the following symptoms, please get checked out by your doctor:

• Pain, swelling or stiffness in one or more joints;

• Joints that are red or hot to the touch;

• Frequent joint tenderness or stiffness;

• Sausage-like swelling in one or more fingers or toes;

• Pain in and around the feet and ankles;

• Changes to the nails, such as pitting or separation from the nail bed;

• Pain in the lower back, above the tailbone.

psoriasis isn’t contagious but awareness is

I got this today in my mailbox, and I think I’ll be giving it a go:

Psoriasis isn’t contagious, but awareness is! Each August, the National Psoriasis Foundation sponsors “Psoriasis Awareness Month,” dedicated to raising awareness about psoriasis and psoriatic arthritis, dispelling myths around these diseases and educating the public. This year, we are putting the lens on life with psoriasis and psoriatic arthritis, with its ups and downs, frustrations and realizations. Do you have a story to tell? We invite you – and the followers of your blog – to participate in the first-ever psoriasis and psoriatic arthritis online film festival.

Submit a short video for the Spotlight on Psoriasis and Psoriatic Arthritis Online Film Festival in one of six categories:

Youth – Calling all kids! Get out your video camera and show us what it’s like to be young with psoriasis/psoriatic arthritis.

Action – Have you taken action recently to help find a cure? Show how you are taking a stand through grassroots advocacy and volunteer activities.

Comedy – Are psoriasis and psoriatic arthritis funny? No! But you can help bring a lighthearted spin on living with chronic disease when you submit a comedic video.

Horror – Sometimes dealing with a chronic disease can be downright scary.

Music video – Got a song about psoriasis or psoriatic arthritis? This category encourages you to let the music flow.

Animation – Superheroes, aliens and talking animals can play a starring role when you tell the tale of life with psoriasis and psoriatic arthritis. Not an animator? Try this software: www.xtranormal.com.

Competition is open to anyone with psoriasis and/or psoriatic arthritis and the people who love them. The grand prize – as determined by the most online votes – is a $500 Visa Gift card. Deadline to submit a video is Aug. 28, 2011.

Read the Festival FAQ and the competition rules and regulations at http://www.psoriasis.org/pam.

keeping up

via Glamour

So, apparently Kim Kardashian has psoriasis. I’m not so sure I like the tone of this L.A. Times blog post, but at least the writer mentions it is an autoimmune disease (though the off-hand mention of methotrexate as a treatment for it leads me to believe someone didn’t quite do his homework, despite the mention of the National Psoriasis Foundation’s website). But, I digress.

I was lurking on some of my psoriasis boards, and I came across something interesting—and it was the same on pretty much every forum I visited: People universally wanted Kardashian to step up and use her notoriety to gain some recognition and awareness for the disease (as if showing the entire world [that watches "Keeping Up With the Kardashians," at least] the moment of her diagnosis wasn’t enough). I was pretty surprised at my reaction.

I completely disagreed with them.

I know, right? Isn’t that exactly what I’m trying to do with my little blog? Sure, it is. And it would be awesome if she decided to become a spokeswoman for the NPF. I would be right behind her. But I’ve had psoriasis for more than a decade, and it took most of that time for me to accept it, to be willing to talk about it with others. How can I expect someone else—regardless of where she falls on the obscurity-fame continuum—to be I bigger person than me? To be braver than me? Hell, I still blog under a pseudonym, and she let perfect strangers into her doctor’s office with her, let them watch her reaction to finding out she has a lifelong autoimmune disease.

Honestly, I think even if she didn’t lift a finger to raise any more awareness about psoriasis, I’d say she’s done quite a bit. After all, we’re all talking about it, right? And so are quite a few people. Searching Google for “Kim Kardashian psoriasis” brings up about 554,000 results. Yowza. So, right on, Kim.

we, the patients

I think just about everyone who deals with chronic illness has had at least one terrible doctor. I know I have: I’ve had a dermatologist who told me psoriasis is only a skin condition and was the result of a reaction to using a new shampoo (both wrong, by the by), and I had a rheumatologist who only wanted to treat me with pain pills (which is horrible for so many reasons).

Everyone has the right to adequate medical care, and part of that is seeing a doctor who is willing to work with you; of course, the patient must be willing to shoulder some of the burden for his or her own health, too. So, the National Psoriasis Foundation Medical Board and Board of Trustees worked with Dr. Jerry Bagel, director of the Psoriatic Treatment Center of Central New Jersey and a clinical associate professor at Columbia University, to create a patient’s bill of rights to make sure both doctors and patients know their responsibilities in making sure psoriasis and psoriatic arthritis are properly treated.

Some of the highlights are:

  • People with psoriasis and/or psoriatic arthritis have the right to receive medical care from a healthcare provider who understands that psoriasis and psoriatic arthritis are serious autoimmune diseases that require lifelong treatment.
  • People with psoriasis and/or psoriatic arthritis have the responsibility to be actively involved in managing their disease by participating in healthcare decisions, closely following treatment plans recommended by their healthcare providers, and making healthy lifestyle choices to ease their symptoms.
  • People with psoriasis and/or psoriatic arthritis have the responsibility to be honest with their healthcare provider about their health and lifestyle decisions that may affect the success of his or her treatment plan.

The rest of the document is filled with other good expectations for doctors and patients. I hope this helps doctors and patients communicate with one another and realise that we’re all on the same side—or, at least, we should be.

from end to end

Now that enough time has passed, I feel like I can really delve into the impact my escapade to the Washington, D.C., area for the National Psoriasis Foundation‘s National Volunteer Leadership Conference and Capitol Hill Day a couple of weeks ago.

As I said before, I asked for a preemptive steroid taper  to help me get through the drive to D.C. and all the walking I knew I’d be doing once I got there. I finished that today, actually, though my NP was awesome enough to add a refill to it in case I need a quick taper again. And despite the fact that I managed to stave off prednisone weight gain by working out on our borrowed NordicTrack just about every day and the crazy thirst that made me have to pee 4,506,597 times per day and the oddly vivid dreams and nightmares, I know I would not have survived that trip very well without it.

The Professor and I went up to the D.C. area a few days before the conference for two reasons: to see the sights (like the Newseum!) and to give me time to recouperate from being in the car for several hours. We timed it pretty well and ended up not hitting any traffic around Richmond, Va., or D.C. Our first full day there, we took it pretty easy, just running a few errands and grabbing the first of many cinnamon dulce iced soy lattes from Starbucks. (Yum.) On Saturday, the day before the conference, I seriously overdid it. We went to the Newseum (!)—which was amazing; we didn’t have time to see everything, so we saw the Katrina, 9/11 and Berlin wall exhibits and the Pulitzer gallery—before hitting the Washington Monument and the World War II memorial. That was a ton of walking, and my hips were sore for days after. But, thanks to the prednisone, I was able to push through.

The conference itself was amazing; if I ever get the chance to go again, I would definitely built in more rest time so I felt able to do more socializing! But it was great to meet people who so totally got it—as well as people from the National Psoriasis Foundation that I’d talked to on the phone or by email before. It was nice to get a face to go with the voice or the name—especially since not a one looked the way I pictured.

Overall, now that I’m back home and back into my regular crazy routine, all of that didn’t knock me out the way I had expected it to; my psoriatic arthritis is still not perfectly controlled but not any worse than it was and my skin still hasn’t decided whether it wants to flare or not, but it hasn’t been pushed over the edge (yet). So, all in all, I guess the trip was a success in more ways than one.

time to end psoriasis

The United States Capitol in Washington, D.C.

Image via Wikipedia

Guys, the National Psoriasis Foundation’s National Volunteer Leadership Conference (if you follow me on Twitter and saw a lot of #psonvlc, that’s what it was referencing) was awesome—and a great excuse to take a few days off work and hang around Washington, D.C. I’ll write more about the trip itself—and its impact on me, health-wise—later.

The conference was really great; there was an exhibit hall with vendors and information, all kinds of breakout sessions on everything from raising awareness to raising money and—of course—the big event: Climb the Hill for a Cure day, when psoriasis advocates hit up their Congressional representatives for support of the Psoriasis аnd Psoriatic Arthritis Research, Cure, аnd Care Act of 2011. (I was unable to go to that, unfortunately, since Tuesdays are a big day in newspaper-land.)

The breakout sessions I attended were on raising awareness on social media and in the traditional media (I actually got to talk a bit about being a blogger and the editor of a newspaper, though the latter half on newspapers was more of a rant on what annoys me and leads me to not publish things in the paper), a round-table discussion with some of the other mentors in the One to One program and a presentation on the highlights of psoriasis research and drug development. If you guys want, I can post my part of the social media presentation here; I’m also trying to get a hold of the PowerPoints from some of the other presenters, since I’ve had requests from people who weren’t invited to the conference. If and when I get them, I’ll post ‘em here, too.

But one of the coolest parts of the conference was meeting so many amazing people, like Marie B and Kathryn and Chris, mum to Carly and Katelyn. It was so refreshing to be in a room with people who get it, who have gone through what I’ve dealt with because they have psoriasis or they have psoriatic arthritis—or they know and love and support someone who does. I left the conference feeling like anything was possible. Just a few days later, I’m struggling with putting that feeling into action, but if nothing else, I left feeling hopeful. And that’s a good start.

back on the ‘roid train

Newseum, Pennsylvania Ave. entrance, in Washin...

Image via Wikipedia (I love the Newseum!)

My impending trip to D.C. has forced me to take a long, hard look at how I’ve been feeling lately. And, if I’m being completely honest, how I’ve been feeling lately would best be described with a shrug and a “meh.” So-so. Comme ci, comme ça. And so on.

As much as I’m looking forward to it—and I so am—I know it will take its toll; there’s the five-hour (or more, if we hit traffic) drive there and back home, the walking around seeing museums (and the Newseum!) and just taking in the sights, the meeting new people and learning new things. All in all, a mix of stressors good and bad.

So, I’ve taken (and will take) some proactive steps to ensure that I can enjoy the trip the fullest and still be functional when I get back home (and have to go back to work the next day). The conference doesn’t start until Sunday, but I took tomorrow and Friday off, too, so the Professor and I can make a leisurely drive up. We’re staying with friends the first few nights, which I find less stressful—and more homelike—than staying in a hotel. The Professor bought me a comfy seat cushion for the car since the 2006 Honda Civic is not the most comfortable vehicle for drives totally more than an hour.

And—the biggest step: I asked my awesome NP for a quick steroid taper, which I started today. I’m not thrilled to be taking it in addition to the triple therapy combo of methotrexate, Enbrel and Plaquenil (and an NSAID and a muscle relaxant and an opiate, if I wasn’t so sensitive to damn things), but I know trying to force my way through will only leave me feeling worse in the end. And—combined with the oppressive heat and humidity (seriously: how is 100 degrees with 90-plus percent humidity normal for the end of May and beginning of June?)—I know just how bad muddling through can make me feel. I’m not going there again if I can avoid it.

So, to anyone who encounters me over the next two weeks: I apologize in advance for any crabbiness, waspishness or general cantankerousness. It’s the ‘roids talking.

 

climb the hill for a cure conference

Tweeting bird, derived from the initial 't' of...

Image via Wikipedia

I’ve talked before about volunteering with the National Psoriasis Foundation, especially the One to One peer mentoring program. As a result of my work with the organization, I was invited to the Climb the Hill for a Cure conference in Washington, D.C. It starts Sunday, and I couldn’t be more excited. I get to be involved in workshops on getting my point across (blogging, social and traditional media), the One to One program and psoriasis research.

But even better than that, I get to use my knowledge as a small-town newspaper editor and a blogger with many tens of readers to talk about—you guessed it—getting your point across. And while I’ll definitely be blogging and Tweeting the conference, I want to pick your brains: what do you see as the purpose of your blog in particular and patient blogs in general? Are you an activist offline as well as online? How do you use your blog and social media to raise awareness about your disease and or chronic illness?