new guidelines for diagnosing plaque 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.

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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.

a love/hate relationship

Enbrel and I have a complicated relationship.

Without he extraordinarily expensive biologic, I barely function. Its beneficial effects are somewhat diminished due to the ongoing methotrexate shortage, but even so I’m doing better on it than I would off it.

Still, I really hate taking the shots. I mean really hate it. I put it off on Sundays as long as I possibly can because, well, it hurts. And I don’t like hurting myself on purpose.

But I have a system.

And that system includes spades on my iPhone and, at least for now, Disney princesses. Belle is my favourite, of course.

Anyone else have any tips for making the medicine go down more smoothly?

psoriasis blog: me with psoriasis

I recently discovered a relatively new psoriasis blog, “Me With Psoriasis.” The author was recently diagnosed with psoriasis and keratitis and is super open about the impacts on her. It’s a great read, and I’ve definitely added it to my blog list. Enjoy!

resolute

Image via Wikipedia

I’ve never really been one for New Year’s resolutions. I get the appeal, but it’s never been something that’s really worked for me. Still, this year, I decided to give it a go and wrote a 12 in 2012 list.

What’s on it? Why, I’m glad you asked.

1. Be vegan. I’m committing to really making the switch this year, to being 100 percent vegan. Of course, it helps that I just found an awesome vegan macaroni and cheese recipe (that I’ll definitely be posting!).
2. Be healthier. Eat better, sleep more, get exercise and be compliant on medication and treatment. I need to be better at this to control what I can about my health.
3. Be more involved at church. I already teach Sunday school, but I’m going to join the choir as well and start going to the young adult meetings, too.
4. Sew something every month. Put that Pinterest inspiration folder to use! This month, I’ll try to tackle the skirt that’s been fighting me.
5. Read more. The mister got me a subscription to “The Economist,” so I want to read that every week plus at least one book per month.
6. Date the mister. Got on one real date per month. This will get interesting, since we’re poor (see: I’m a journalist; he’s a student), but we’ll make it work.
7. Battle blogger burnout. Find a blogging schedule that works well for me and stick to it.
8. Write a 30 by 30 list and start checking things off.
9. Speak more French.
10. Keep my space clean and organized—at work and at home. This is a biggie, and it’s something I’ll usually let slide. But I feel better and am more production when my area is tidy, so I want to make this a priority.
11. Get creative with my closet and my style instead of constantly buying more stuff or falling into a rut. To that end, I’ve started a little Tumblr and am going to take pictures of myself, style blogger styles. I think seeing how awesome my wardrobe is will help.
12. Be present.

What resolutions did you make—if any?

Related articles

• New You Resolutions (20somethingfierce.com)
• New Year’s Resolutions That Stick (carolinaonemortgage.wordpress.com)
• Hold the Cheeze/Vegan Pasta with Peas and Mint (thetraceyshow.com)

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.

rather burn out than fade away

So, I’ve been rather a bad blogger.

I wish I could say it was because I was out being too awesome—though that’s part of it.

Or that I was ill and just couldn’t blog—though I was for a bit (including a nasty bit of laryngitis, yuck.)

Honestly, though, it was mostly just burnout. I was really just over being positive, over being forthcoming and, most of all, over being sick. I’m not really sure why it hit me so hard or why it did right then, but I guess it was bound to happen eventually.

Being accepting, being positive all the time in the face of something that’s not going to get better and not going to go away, that’s really difficult. I had a pretty good run of it: working on 15 years with psoriasis and creeping toward a decade with psoriatic arthritis. For most of that time, I would say I had a damn good attitude. I took my pills on time. I did what I was supposed to do.

But, I’m still sick. And I think it just hit me hard all of a sudden that even though I’m doing all the right things, even though I’m doing everything I should, that’s no guarantee that I’ll feel good or even just OK on any given day. And that sucks, quite frankly. I wish it worked the way everyone says things should, that we would get out what we put into it. I wish it was fair. But it’s not. And I know that.

I just needed some time, I think, to wrap my head around that once more. I needed some time to be negative and to regroup.

What I’m trying to say is I’m done with that.

I’m back.

oh, that we were there

Happy Christmas, everyone!

I could teach you

I was thinking about what I know well enough to teach a class in, and that led me to the classes I’ve actually taught over the last few months.

I’ve did a session on column-writing at my company’s editorial conference (which blog writing has definitely helped me with). I taught a class at my local state university on community journalism. I’ve taught a high school journalism class a quick and dirty design and style class. I’ve done tips for getting your story into your local paper.

So, I guess most of my talents lie with journalism and writing and newspapers. I could definitely learn you all a thing or two on that.

What would you teach?

This is a part of National Health Blog Writing month–30 posts in 30 days.

staring out into the future

One of the things I love about my favourite health bloggers—like Kerri—is how much they always have going on. One day, I would love to be able to make health activism my job, but I’m not there yet (and I’m not so sure I want to leave journalism. But that’s another story.) I’m a huge fan, too, of how much she does for her community, and I think she’s a great model of what health activism can look like.

I think the future of health activism is just more: more patient advocates sharing their own experiences. I think we’d all do the most good if we banded together instead of just focusing on our own diseases. My psoriatic arthritis isn’t so different from Wren‘s or Jillbean‘s rheumatoid arthritis. We’re helped by many of the same drugs and have many of the same demands.We’re hit with many of the same problems. Plus, added all together, those with different autoimmune diseases number many millions strong; imagine if we spoke with one voice. We’d be unstoppable!

So, I hope the future of health activism is more inclusive, more welcoming to different groups—and to people with symptoms but no diagnoses; I hope we one day realise a rising tide lifts us all to higher ground.

 

(Edited to add: See this? This is exactly why Kerri’s so awesome.)

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

brand new day

It’s funny how you become kind of a slipcover version of yourself when you blog: some traits get magnified, others eliminated, and everything is told through the prism of my experience. I’m not sure what I look like to all of you, but I do know a thing or two about branding.

What would I want the Nessie brand to be? A wiser, funny older sister type who has been through it all and tells it like it is—but isn’t afraid to get serious. Am I there? I guess you guys would be the judge of that.

I also feel like there is pressure for me to be positive all. the. time. And there’s definitely a place for that; I don’t want to be a Debbie Downer because that’s not who I am offline. But psoriasis and psoriatic arthritis sucks; it’s a raw deal, and I think it’s reasonable to expect some down moments. I am not one of those people who gets all, “I’m sooooo grateful for chronic illness. Yay life lessons!” That’s not me; I’m not all sunshine and rainbows. But I do believe in making the best of things and accepting your situation—even while acknowledging that it’s not fair and it’s a tough break.

My brand? I guess I’m a little bit Jersey and a little bit Canada. And I’m OK with that.

 

Psst! You guys are good! Check out the comments to find out what my lie was.

 

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J