always something (there to remind me)

Flourless Chocolate Cake with Chocolate Glaze

Image by Rooey202 via Flickr

Now that I’m nearly vegan—and my lactose-intolerant insides thank me for finally going back to being dairy-free—I’d noticed that I was still feeling gross sometimes after eating, the way I would after I would down some ice cream before, and I couldn’t figure out why. But then it hit me: I felt awful after eating stuff with gluten in it.

So, that’s what I’m trying next: going gluten-free. As I was doing some research as to the best way to go about this, I ran across an interesting study published in 2001 by doctors at a Swedish university (here’s a WebMD article that breaks it down) that had some really interesting findings about gluten and autoimmune arthritis, namely that a significant minority of people with (in this case) rheumatoid arthritis round relief in a gluten-free diet.

That’s really exciting to me; going vegetarian and then vegan has helped somewhat, especially in the face of the six-month Enbrel effectiveness dip I always seem to hit. If going gluten-free was even as effective as that, I’d be feeling pretty darn good. Of course, it won’t be easy; being a vegan already restricts what I can eat, and obviously going gluten-free would be even more restrictive. Still, it can be done (and I found a vegan GF cookbook!). And, even if it doesn’t help, it’ll certainly be healthier, which is another benefit.

But for you GF folk out there: What are your favourite resources?

medical jargon: studies show anti-TNF drugs don’t raise cancer risk

There was an interesting Arthritis Today Magazine article sent to me by the Arthritis Foundation not too long ago: Several studies have found there is not statistically significant cancer risk for those who take anti-TNF medications, like Enbrel or Remicade.

This could be a big deal; even though I take a TNF-blocker (hello, Enbrel) and I’ve been on several others in the past (hi there, Humira and Remicade and Orencia) because they’re the only things I’ve found so far that make my psoriatic arthritis manageable, I was and remain aware of the potential for an increased risk of cancer. I imagine all of us on these types of drugs have that knowledge in the back of our minds, and I’m certainly aware of people who decided not to take these drugs because of that risk. It’s a choice only each of us can make.

But, perhaps, this will put some minds at ease and allow more people to get on these treatments—if that’s what they want. I know they’ve helped me, and I wouldn’t be able to do everything I do without Enbrel, as I found out last year when I went off it for just six months and quickly found myself in one of the worst flares I’ve ever experienced. So, despite the risks, I’ll take my weekly injection; even so, this will let my mind rest a bit easier.

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.

#HAWMC day 11: wikipedia is totally a source

Wikipedia: The bane of academics and the friend to journalists who need a quick and dirty lesson on something completely out of their field, like stormwater retrofits and non-infringing use.

But, as much as I may enjoy it professionally as a jumping off point (fledgling reporters, take note: It is never OK to use Wikipedia as a source in copy), the psoriatic arthritis entry kind of leaves me cold. It’s as sterile as a an operating room and about as pleasant to encounter. Seriously, take a gander. Back? Good.

If I were to have the endless spare time necessary to rewrite the entry on psoriatic arthritis, I would definitely make a few changes. First, why is it seriously the shortest medical entry ever? And the most sparse? There are lots of details that could be filled in, lots of areas that could use expansion. Starting with everything. Writing one line per subhead does not an article make. It should not take me more time to flippin’ braid my hair than it does to read some copy on a serious medical condition.

Also, could they have found a worse picture to showcase what PsA is? Oh, look, your feet are horrifically puffy and your nails look kind of funky. Other than that, it’s all sunshine and lollipops.

For a jumping off point (and a community-edited source), I guess it could be worse. But I would home someone interested in the disease would click on one of the few links to find something, somewhere that was a little bit more in-depth. Like a children’s book or a comic strip.

another recall

Logo of the U.S. Food and Drug Administration ...

Image via Wikipedia

Right on the heels of the methotrexate recall from a few weeks ago, here’s another: The FDA pulled Darvon and Darvocet from the market. It is the most recent painkiller to be prescribed to me, but as it’s not one I took very often, it’s not the blow the MTX recall was. Still, it’s just one fewer weapon in my arsenal to fight the psoriatic arthritis.

It’s kind of scary that, after decades on the market, a drug that was thought to be safe could be pulled off, just like that.

It makes me wonder what we’ll learn about the drugs we’re on now 10, 20 or 30 or more years down the road. I guess it’s a balancing act for patients: On one side of the scale, we’ve got to trust our physicians, pharmacists, the FDA, everyone involved in allowing us some semblance of health; on the other, we’ve got to do the research ourselves and trust our guts if we feel as though something isn’t right for us. I guess it all really just underlines one thing for me: the need for a cure. For all of us, regardless of our autoimmune disease. One day—maybe even within my lifetime—I would love to be able to take some treatment, pill, whatever and be done with it all. Until then, though, I’ll keep slugging alone, taking whatever drug straddles the line between helping and harming.

Novartis Exec: Golden Age Of Generic Biotech Drugs Is Coming « The Science Business – Forbes.com

This, biologics — which are terribly expensive, even with insurance — becoming available as generics, could be a huge deal.

Novartis Exec: Golden Age Of Generic Biotech Drugs Is Coming « The Science Business – Forbes.com.

I’ve been on three different insurance plans (one: Dad’s stellar insurance; two: my own decent insurance with one company; three: mediocre at best insurance) and the cost of the biologics has varied dramatically, from a doctor’s office co-pay to $60 for a month’s supply to $200 for a month’s supply. I guess we’ll just have to wait and see whether the FDA will allow for the creation of generics for Enbrel or Humira or any of the others.

mindfulness

An interesting article (and now old) from The New York Times describes how the doctor-patient relationship has been changed because of the increasing intrusions into a doctor’s day and increasing demands on her time.

All of us had had the experience of “disappearing” into the meditative world of a procedure and re-emerging not exhausted, but refreshed. The ritual ablutions by the scrub sink washed away the bacteria clinging to our skin and the endless paperwork threatening to choke our enthusiasm. A single rhythmic cardiac monitor replaced the relentless calls of our beepers; and nothing would matter during the long operations except the patient under our knife.

We had entered “the zone.” We were focused on nothing else but our patients and that moment.

But my more recent conversations with surgical colleagues and physicians from other specialties have had a distinctly different timbre. While we continue to deal with many of the same pressures that my mentor dealt with — decreasing autonomy, increasing administrative requirements, less control over our practice environment — the demands on our attention have gone, well, viral.
Extreme multitasking has invaded the patient-doctor relationship.

It is painfully obvious when a doctor has checked out and no longer cares about the individual patient or the patient as an individual. I’ve experienced it myself — to disastrous results.

But the article made me think a little; I know kicking that man, a doctor who didn’t treat me as singular, who was clearly used to either treating patients who didn’t question or were much older than I am and thus needed different kinds of treatments, to the curb was the best thing for me, but doctors certainly need to think about being mindful, taking joy in their profession and seeking to help their patients.

Of course, patients need to take some responsibility, too. Constantly e-mailing or phoning doctors for things that reading the drug pamphlet provided by the pharmacist could answer or unnecessarily taking up doctors’ time (notice I said unnecessarily) adds to the burnout that causes doctors to withdraw. I think sometimes we too often think of doctors as adversaries or as their job, instead of realising they are people too. I think more mindful doctors — and patients — would lead to better relationships and overall better care.

Food for thought, I guess, about doctors, who really are a lifeline for their chronically-ill patients.

interesting, very interesting

At the risk of making this a blog exclusively about PsA, here’s a great link from a February 2009 New York Times article about the mother’s effect on her baby’s immune system.

Researchers have long wondered how pregnant women might shape their fetuses’ development — by protecting them against later disease, perhaps, or instilling an appreciation of Mozart.

Now a group in California has discovered a surprising new mechanism by which women train their fetuses’ budding immune systems: the mother’s cells slip across the placenta, enter the fetus’s body and teach it to treat these cells as its own.

A crucial task of the developing immune system is to learn to distinguish between foreign substances and the self. It is tricky: the system must respond to outside threats but not overreact to harmless stimuli or the body’s own tissues.

The new findings show “how Mom is helping to tune that whole system early on,” said William J. Burlingham, an immunologist at the University of Wisconsin, who is not connected with the research. “It’s a major advance, very new and very exciting.”

The work could have relevance to research on topics as diverse as organ transplantation, mother-to-child transmission of H.I.V. and autoimmune disorders like Type 1 diabetes.

“It points the way to a huge range of biologically significant questions that are worth exploring,” Dr. Burlingham said.

(Found via Understanding Psoriatic Arthritis.)

I think this is fascinating, and it represents a brave new world in how the immune system works. I don’t understand it all myself (yet; I may have to go to nursing or med school just to understand the research around my disease!), but even I can see the implications.

Really interesting. I’m not sure what implications this has for me as a person who may want children one day, but it gives me a jumping off point and a lot to think about.