Tuesday, March 31, 2009

Are psoriasis and psoriatic arthritis different diseases?

Maryanne Kazanis, a research fellow at Harvard and a med student, presented a paper in Japan last summer suggesting that psoriasis and psoriatic arthritis could possibly be different diseases. Check this out:

Support for the one-disease concept comes from the observation that arthritis occurs more frequently in patients with cutaneous psoriasis than in nonpsoriatic controls.

On the other hand, the fact that a drug such as cydosporine is effective for the skin manifestations of psoriasis but provides little benefit for psoriatic joint symptoms has caused many physicians to lean toward the view that psoriasis and psoriatic arthritis are two diseases, albeit possibly sharing some immunopathogenetic elements, Ms. Kazanis said.
The heart of the article goes on to discuss Kazanis' research, which demonstrates that different diseases co-occur with psoriasis vs. psoriatic arthritis. The article also highlights some of the measurement issues in this study. It's worth a read...

My two cents? I'm again struck with the similarities between psoriatic arthritis and rheumatoid arthritis, both in symptoms and the types of treatment that work. We really are just beginning to learn about these diseases, and anything is possible. What if psoriatic arthritis and rheumatoid arthritis are the same disease, with a few different symptoms? What if rheumatoid factor is just a symptom that some folks develop? And... what if psoriasis is a different disease that occurs a lot in people with PsA/RA type arthritis? What do you think?

I really gotta go get my M.D. This armchair speculation is making me woozy.

Monday, March 30, 2009

Week 10 - what a wild ride

Humor me - I'm getting all weepy here...

It's almost week 10 of my blogging campaign, and I'm simultaneously exhausted and thrilled. As many of you know, 9 weeks ago I committed to writing a post on my blog every weekday, with three goals in mind. Those goals were:
  • to learn more about Psoriatic Arthritis, which I've come to call the "ugly stepsister" to Psoriasis and Rheumatoid Arthritis because it is so poorly understood. I wanted to learn more about this disease I have, and share what I'm learning.
  • to write every day, in order to learn write and to find my voice.
  • to raise money for a wonderful non-profit in San Francisco that helps homeless street youth. This blog is the product of a 10 week fundraising campaign.
Creating this blog has been one of the most transformative experiences of my life. I never expected to love this process so much, and I never expected that the urge to share what I was writing would overwhelm my fear of writing so publicly. I also never expected my community to support me the way that you have. $1600! So many kind comments. Thank you, thank you!

So where does the blog go from here, at the end of these 10 weeks, when the fundraising stops?

I just can't stop! I'm addicted.

But I also realize I don't have something profound to write about at length every day.

I do have something to share every day though - an article or an idea, or a research finding about psoriatic arthritis or autoimmune disease.

So, I've decided, from now on, every week, I'll be writing a bunch of shorter posts. Sortof a "hey, if you have PsA, read this! It's cool!" bunch of blurbs - very Andrew Sullivan (my blogging style hero). I'm also going to broaden out and write a bit more on autoimmune disease in general. It's all related.

Also, every week, I will write at least one longer piece on something I'm thinking about or researching. For example, this week I'm learning a bunch about comorbidity and autoimmune disease - why do these diseases like to hang out together in a pack? Why if we have one are we more likely to have two?

And finally, every week, I'll post a N=1 post - how am I doing? (BTW - I'm flaring right now and the pain in my hands and elbows is excruciating - please forgive the grammatical errors and boring prose).

Thanks everyone for making this one of the most amazing experiences of my life. Keep reading, I'll keep writing. I hope to make this blog useful and usable for those of us who want to better understand the mysterious ways our bodies behave.

Friday, March 27, 2009

More than a green blanket

My daughter has a knitted blanket that has been on her bed since she was 1 month old. It's a lovely jade color, with a complicated zig-zag design. After 10 years, it has become a member of the family - something we all recognize and include in our sense of "home".

This blanket was given to my father-in-law, a surgeon on the East Coast, by one of his patients when she learned he was going to be a grandfather for the first time. It was a gift for my daughter, but really it was a gift for him, because he had gone over and above the call of duty for her in a time of surgical need.

My father-in-law is the kind of doctor you want to have - his patients and their needs seem to always come first (even ahead of Thanksgiving dinner, sometimes). When you call him with a problem, you know he's not just listening to a list of symptoms, but instead he's listening to how you are feeling about those symptoms. He's the one who convinced me that I did not have lymphoma a few years back, even though a few symptoms were pointing that way. It all didn't add up, and he took the time to work with me and my fear to get to the right diagnosis. "If it looks like a duck, and quacks like a duck... it's not a zebra, Jen" I remember him saying in a warm, confident voice. He was right. It was a duck.

I was reminded of my father-in-law when I read this article from the New York Times about the relationship between a patient and his or her physician. No shocks here - just a call for connectedness. This article made me think about the many doctors I have now, and have had. Read it and think about your doctor, and doctors, think about your patients.

I'm lucky to have a good doctor in the family - but we all should have a doctor we would make a blanket for.

Thursday, March 26, 2009

What's your buzz cut?

Today's New York Times has a beautiful article about self-image and illness, written by Dana Jennings, a blogger/writer who has prostate cancer and has gotten a buzz cut to help get through. He says:
In a time of utter vulnerability — having already weathered three months of post-diagnosis ups-and-downs — I needed the primal ferocity that a buzz cut proclaims. I needed to look like a soccer thug or an extra from “Prison Break” to help get me through surgery, the physical indignities of post-op life, and my subsequent radiation and hormone therapy. I still do. My prostate cancer and its treatment have transformed me — in body and spirit — and the buzz cut has helped me cope with those changes.
For many people, including myself, chronic illness profoundly changes who you think you are. Jennings quotes Dr. Robert Klitzman, an associate professor of clinical psychiatry at Columbia University Medical Center, who aptly says:
“The challenge with cancer is to find a new sense of self... because the narrative of yourself has been disrupted".
I think this is true of chronic illness as well. I know I have struggled immensely with my personal narrative since October, when I found out I have three inflammatory and chronic diseases (celiac disease, psoriatic arthritis, lymphocytic colitis). My childlike belief in my own invulnerability has been exchanged for a terrifying sense of my own mortality. While externally I'm talking and writing and "being" my disease, internally I cringe when I think of myself as someone who ONLY is sick. The other identities - aspiring writer, competent mom, non-profit professional, loving wife, all seem to hide behind the title "sick person".

I despaired in October, as you can tell if you read the first few posts on this blog. I wallowed. I grieved deeply for the me that I felt (and still feel) was lost.

This blog may be my buzz cut. I can't be silent. I'm writing in order to create the new me - a me who is sick, but is also many other things: a researcher, an advocate, a writer. Dana Jennings says about his true self:

I am basically a cream puff. But I like the contradiction, the tension, that the buzz cut seems to represent between my inner and outer lives.

The buzz cut is a kind of veil or, perhaps, a mask hiding my secret identities: one of which is being a cancer patient.

But to be honest, I don’t think I’m hiding anyone. We are, all of us, a bundle of apparent contradictions. Even though I’m a dreamy pragmatist, I need the guy with the glare, the shaved skull and the brutishly broad forehead to help me through the day.

I need to write to get through my day. What's your contradiction? What's your buzz cut?

Wednesday, March 25, 2009

N=1: Leukopenia Limbo

I got "the call" the other day - don't you hate "the call"? The call goes something like this:

"Hello, Jenny, it's Dr. _______. Nothing to worry about, I just wanted to talk to you about the results of one of your tests. Give me a call at your earliest convenience."

This is the second time I've gotten "the call" this year - the first was for my diagnosis of Lymphocytic Colitis. What happens when you get the call? No matter how calm and reassuring your doctor sounds, you react: your heart rate elevates, you get a bit distracted, you can't find the phone, then you find the phone but can't find the number of the doc, you drop the phone while you search your purse for the number, etc etc. All the time telling yourself - "s/he says not to worry, so why are you being such a freak?"

So this time it really is probably nothing, but I do think it is yet another interesting piece of data in my "journey". (Boy, now I sound like I'm part of a reality dating show).

I went on Humira in October, and now my white blood cell count is low. I'm just under the low limit of normal. This is referred to as leukopenia. Your white blood cell count goes up and down every day, apparently, so this one test result is likely nothing to worry about. BUT, it does mean that we (my fab rheumatologist and I) have to keep a close eye on my blood for a while. More blood tests in 2 weeks.

What this also means is that andalimumab (Humira) is doing its job - perhaps too well, it seems. Humira suppresses part of my immune system, TNF-alpha, which is produced by my white blood cells. TNF-alpha is also what is believed to cause inflammation in those of us with Psoriatic Arthritis and Rheumatoid Arthritis.

The low WBC count also supports my hypothesis that Humira had something to do with my cold that lasted a month. White blood cells basically ARE your immune system, to speak broadly.

So I'll be in limbo for a few weeks, til the next blood tests come in. How low can I go? How low can I go?

Tuesday, March 24, 2009

Cinderella II - let's do something good

Yesterday I threw some data out there showing that there is a huge inequity in the amount of research done on RA versus PsA, and I promised to offer some suggestions today on what we can do about it.

I'm not a shill for the National Psoriasis Foundation, really... I promise. But if you're looking for the best bang for your buck in advocating for more research, go to their website and DO something. Write a letter to your congressperson, walk (or hobble, for some of us), make a donation or give some blood.

But, in addition, talk, talk, talk about Psoriatic Arthritis. We should certainly be talking about our disease to our health care advisers (doctors, pharmacists, physical therapists), but really, talk to everyone. You never know who is listening. That mom at school may be a drug rep for a big pharma, that guy at your book group might have a cousin in research. I suspect that there are so many Google hits for RA because there are so many Google hits for RA! It is a vicious technological circle... because Rheumatoid Arthritis is already in the national dialogue more than Psoriatic Arthritis, when people search for "autoimmune arthritis" or "joint pain" RA comes up more often. Frequency breeds familiarity - so lets make PsA come up more frequently - in conversation and in web searches. I love those new Humira ads, btw - they are doing wonders for building familiarity.

I know we're tired, and some of us feel ugly. My scalp is a nightmare, and have I mentioned that my knees look like grapefruit? I'm no princess. It's hard to go public - I know. But the sooner we make ourselves known, the more we will be included in the national dialogue, and the more scientists will sit up and take notice.

Rant over - gotta go find my tiara.

Monday, March 23, 2009

Let's bring Cinderella to the ball

I've been joking about PsA being the ugly stepsister to RA and Psoriasis - but, in all seriousness, I do want this blog to be more about data than speculation. So this morning, I took a few minutes to check my assumption that prince charming (research) wasn't dancing with us PsA-ers as much as with the other girls.

Prevalence is hard to pin down for these three autoimmune diseases, but using data from the National Psoriasis Foundation and the National Arthritis Foundation, I found these rates:
  • 1.3 million Americans have Rheumatoid Arthritis
  • 7.5 million Americans have Psoriasis
  • up to 30% of those 7.5 million have Psoriatic Arthritis. To be safe I am estimating 20%, which is roughly 1.5 million Americans with Psoriatic Arthritis.
So, we can assume that there is about the same number of people here in the U.S. with PsA as RA.

Now to PubMed, where research articles are made available to the public through the National Institutes of Health. There are:
  • 97,163 articles on Rheumatoid Arthritis
  • 27,203 articles on Psoriasis
  • 3,876 articles on Psoriatic Arthritis
If my math is right, there are 25 articles on PubMed that refer to Rheumatoid Arthritis for every 1 on Psoriatic Arthritis, and 8 articles on Psoriasis for every 1 on Psoriatic Arthritis.

And, of course, to the mothership: Google. As of today, March 23rd, there are:
  • 7,350,000 links for Rheumatoid Arthritis
  • 21,700,000 links for Psoriasis
  • 716,000 for Psoriatic Arthritis
So, there are 10 times the number of links for RA as PsA. (Psoriasis outstrips both of these diseases in Google links, interestingly).

Granted, RA is no princess - it tends to be harder to live with than PsA. But is it 10 times harder? 25 times harder?

More tomorrow - especially on what we PsA patients can do about this. For now, I'm going to buy myself a new ballgown & try to get someone to notice me.

Friday, March 20, 2009

Sweden or bust

What do I want to do this summer?

Go to Stockholm!

I'm having fantasies about learning about the latest research, live-blogging, and drinking Blåbärssoppa. Yum.

Thursday, March 19, 2009

Humor me, but don't kiss me

My dog-eared copy of The Autoimmune Epidemic has me in its clutches again today. I'm bursting with hypotheses, but I'm realizing that my lack of a PhD in biochemistry or genomics or super-brainiac-science-chickness is getting in my way. Nevertheless, I will persevere in my attempt to be the psoriatic Sherlock Holmes.

In "The Autoimmune Epidemic" (starting on page 127) Jackson Nakazawa introduces the work of Drs. John Harley and Judi James. These two maverick researchers discovered a strong link between Epstein-Barr Virus (EBV) (which causes mononucleosis - the kissing disease) and the onset of lupus, which is another autoimmune disease. Jackson Nakazawa discusses how Harley and James were able to:
...travel back in time and show that the autoimmune reaction in lupus patients was a slow-brew reaction to an Epstein-Barr exposure that had occurred months, years or even decades before. (page 134)
Why did this tickle my brain, you may ask?

As I mentioned in an earlier post, my husband and I both suffered from a strange bout of sickness about 4 years ago. Our doctors at first thought it was lymphoma, but then settled on Epstein-Barr/mono (our test results were equivocal).

About 2 years after my husband had mono, he had his first Crohn's disease flare (Crohn's is an autoimmune illness). Also, about 2 years after I had mono, my knees, hands, and wrists flared with psoriatic arthritis.

I haven't had time yet to do a thorough scan of the the research journals, but at first glance there is not a lot out there about PsA and EBV. However, I did find this recent article about the possible link between EBV and our sister disease, Rheumatoid Arthritis. There's something to this, I think.

BTW, 95% of people will have EBV by the time they are 35-40. But most people get EBV, and mono, in their teens (I guess neither of us got enough action in high school). Did our late exposure to EBV trigger our bad genetics, and cause an autoimmune reaction?

More to come. But 'til then... be careful who you kiss, Watson.

Wednesday, March 18, 2009

Great stuff in D.C.

So I've been a'rantin' and a'ravin' about needing more research for PsA, but while I was in bed coughing and flaring last week I completely missed that some great congressmen and the National Psoriasis Foundation were in DC getting the job done.

This press release is on the home page of the NPF website - check it out.
The Psoriasis and Psoriatic Arthritis Research Cure and Care Act (PPARCCA) of 2009, introduced by Menendez today, advances the nation’s efforts to find a cure for this disease and sheds new light on what many people believe is "just a skin rash." U.S. Rep. David Wu (D-Ore.-1st) introduced the House version of the bill in February.
As LeAnn Rhimes might say - Yee HAW!

Burn, baby, burn

Just a quick note... I'm going to be starting laser treatment for my psoriasis soon, if my insurance allows. Here's an article on it from the WSJ. This is extremely exciting new technology. My dermatologist said during each of the 10 treatments, they will only use the laser 'til my skin turns red. They have to be careful that my skin doesn't blister (although she also said that blistering works faster... eeeewwww).

I can't imagine not feeling embarrassed about my elbows this summer.

Tuesday, March 17, 2009

Our little club is getting bigger

After writing so much about the increased incidence of autoimmune diseases, and also about potential triggers for Psoriatic Arthritis, I wanted to make sure I wasn't barking up a non-existent tree. Are Psoriatic Arthritis incidence rates really on the rise?

The answer is... most probably yes.

In this opinion article from the Feb 2009 issue of the Journal of Rheumatology, Dr. Vinod Chandran from Toronto Western Hospital discusses a current study (in the same issue) that demonstrates that PsA rates are in the rise. He also devotes a bunch of page space to the diagnostic challenges of PsA, which profoundly affect how well we can measure incidence rates.

Here's a summary quote from the article, but I recommend going in and reading the whole piece:
...the prevalence of both psoriasis and PsA is increasing, and environmental rather than genetic factors are probably responsible.
So, why do I state above that the rates are "probably" rising? Because of the nature of research and available data. The quoted study was done only on people in one smallish area in Minnesota - so while we can assume this increase is true across the country, we can't be sure. Maybe there is something in Minnesota that is causing an increase - something not present elsewhere. The author also refers to our inability to truly understand why these rates are rising:
Genetic or ethnicity related factors are unlikely to be responsible for the observed change since there has not been any significant immigration or emigration from this “captive” population. It would be interesting to study how environmental factors have changed over the years to give us an explanation. However, such studies are best done prospectively.
(prospectively meaning: not after-the-fact)

I admire Dr. Chandran's analysis of the frustrations preventing true understanding of the prevalence rates of PsA. He cites weaknesses in diagnostics or "classification criteria", which is a reflection of how recently scientists have begun studying Psoriatic Arthritis. Until doctors and scientists nationwide agree on what PsA signs and symptoms really are, it is hard to compare epidemiological studies from different regions. And, of course, it's financially challenging to develop a nation-wide study.

Once again, I'm struck with how much PsA remains the "ugly stepsister" to Psoriasis and Rheumatoid Arthritis. I wish the science behind this disease wasn't still so hit-and-miss. I admire, and appreciate, those scientists and doctors dedicated to this disease, but I wish there were more of them. It may take more and more of us being diagnosed to generate more PsA researchers.

And unfortunately or fortunately, my wishes may be coming true.

N=1: I'm AMA

I'm feeling rebellious this week. I played with fire and took my Humira on Sunday despite still having a bad cough and some nasal congestion. I was told not to give myself the shot while the cold symptoms persisted. I did it anyway, AMA (against medical advice).

As some of you know, I've been having some reservations about whether or not Humira was the right drug for me. Thanks to this cold, I have gone 4 weeks between shots. And boy can I feel it - the Humira does work. My hands are aching (typing this today is challenging), my hips are killing me, my elbows hurt, and I'm just draggy. While the cold seemed to turn a corner on Sat, I was in bed anyway because I was in so much pain.

So I took the shot - risking prolonging my cold by weakening my immune system. Once again, my treatment is a balancing act - the symptoms of the disease vs. the symptoms of the medication.

By the way, I also refused to get into the skimpy gown at the dermatologist's yesterday. All they needed was to look at my scalp and elbows, for goodness sake! My dermatologist was too gracious to say anything, but I think I ruffled the medical assistant's sense of propriety.

Why is it considered proper to be freezing and half-naked in front of strangers?

I'm a rebel, baby.

Monday, March 16, 2009

Staphylococcal aureus and me

Busy busy day - I hope to make more sense of the chaos in my brain tomorrow. During my busy day, however, I ran across three bits of data that I'm trying to connect. I may be stretching, but...:

1) at the dermatologist's office today, I was enrolled in a study on "Staphylococcal colonization and the subsequent risk of serious infection in patients with inflammatory autoimmune diseases" (including Psoriasis, Psoriatic Arthritis, Rheumatoid Arthritis). Very nice young man swabbed my nose and groin, and asked me a bunch of questions about my disease(s) and exposure to Staphylococcal Aureus. They want to prevent further infection in folks like me with inflammatory autoimmune diseases...

2) This article came out in the NYT... Kristof writes about the rather frightening amounts of MRSA (an antibiotic resistant form of Staphylococcal Aureus bacteria) in our food - he focuses on pork, in this article.

and 3) this fabulous post, bringing things full circle. A woman on the NPF Psoriasis message boards did all my work for me, and found a ton of research linking Staph and the onset or flares of psoriasis (ignore the ad in a later post).

So, in short, here's where my head is right now. Some of us have a genetic predisposition to autoimmune disease. Staph infections can maybe trigger and/or exacerbate psoriasis, or other autoimmune diseases, and Staph rates in our food are on the rise. Could Staph be another factor contributing to the increase in autoimmune disease in the US? As for the study I'm in, I'm glad to help, but it could be too little, too late.

I must run and make dinner for me and Sam, which was going to be leftover pork. I think we'll switch to turkey.

Friday, March 13, 2009

Finally went to the doctor today regarding my interminable cough and runny nose. He palpated, he peeked, he pondered.

The diagnosis? Hold onto your hats... it's a "bad cold".

He did give me super sonic cough medicine, however, for which I am grateful.

Why do I like this guy? He's not loving and huggy like our beloved doctor in California. He's not a woman - I thought I'd only see a woman GP! He mumbles a little. So what is it that I like?

After some thought today, I realized that I like him because he treats me with respect, and acknowledges that I have a brain. He's the consultant/doctor I'm looking for. Today, he presented me with the facts - how to tell a cold from a bacterial infection, what he's seeing in his patients this month, how he feels about antibiotics. We talked together about what was best for me at that moment, with the arthritis and Humira and kids at home and terrible cough. He only claims to be an expert in what he's an expert in - basic internal medicine. He's not puffed up.

So I dug around online 'til I found these two websites about how to find a good doctor... and when to fire your doctor. Both of these sites from About.com reflect what I've been learning about how I want to drive my medical care. I especially liked this list of questions (from the first article) to use when interviewing a new doc:
  • Inquire about the doctors' office hours
  • Inquire about availability in an emergency, or a back-up physician
  • Ask about the average wait during appointments
  • Ask the number of patients booked per hour
  • Ask if you can choose the specialist you wish to see
  • Assess your general rapport with the doctor during an interview with him
  • In selecting a surgeon find out how many times a year he performs a particular operation, then compare to national standards
  • Look for F.A.C.S. after the surgeons name indicating he is a Fellow of the American College of Surgeons.
  • These questions seem very detailed, but let me tell you from experience, the devil is in those details. After reading the bit on when to fire your doctor, I'm even more certain that I made the right choice a few months ago when I hit the reset button on my faulty medical care.

    Thursday, March 12, 2009

    Sometimes, broad brushstrokes are good

    If you are dealing with a frustrating medical condition that you don't fully understand, I recommend watching Lorenzo's Oil. I just did, sitting here on the couch with my cough drops and painkillers.

    Lorenzo's Oil is about the real life struggle of Augusto and Michaela Odone to find a cure for adrenoleukodystrophy (ALD). They discover in 1984 that their son, Lorenzo, will probably die from ALD within 24 months, and they take it upon themselves to learn and master the science behind the disease. In about 2 years, they develop an oil which does seem to slow the progression of ALD. Lorenzo ends up living for 22 years - severely handicapped by his disease, but alive. And according to the film, this oil has helped many other boys with ALD.

    Now, of course, this is Hollywood. The story needed a bad guy, and the bad guy in this film is science - the science that needs time, clinical trials, and funding to crank its wheels. I found this excellent paper about the movie and the false hope it can produce in people with chronic illness, and how that false hope can become a struggle for doctors and scientists. Ironically, while the film depicts science and doctors as sometime roadblocks to making progress, the film also clearly shows that the Odones based all of their hypotheses about the oil on previously conducted science. And, in fact, they formed the Myelin Project, which partners with scientists, to:
    "find a cure for demyelinating diseases, such as the leukodystrophies which are genetic and multiple sclerosis which is acquired".
    But they also say:
    While The Myelin Project has taken the conventional steps to advance remyelination research, we have taken the unconventional step of encouraging direct interaction between families and scientists, we continuously remind the scientists that there are people waiting for effective treatments.
    This blog is my spin on that same patient/science tension - to a much lesser degree than the Odones, albeit. One of the most frustrating things about Psoriatic Arthritis has been the murkiness of information out there to help a patient truly understand the disease. I would guess that many people with autoimmune conditions feel the same way. So I started this blog to try to bridge the gap between science and my experience, between research's timeline and my timeline.

    So, once again, I encourage everyone to become your own Chief Information Officers. I've know a lot of doctors - there are smart ones, and dumb ones, and rude ones and helpful ones. But the characteristic they all share is that they are human. There is only so much information one brain can carry. And nobody knows you, your disease course, and your timeline like you do. Empower yourself, and use your doctors as resources (and prescription writers).

    Back to the cough drops. I'm watching "Gandhi" next. Beware.


    This flu still has me in its clutches, so you'll forgive some shorter posts this week, I hope! Besides, my campaign concerns quantity, not quality, so I don't think I'm cheating.

    But I wanted to counter my last post with a more positive piece of data - apparently, optimists live longer than pessimists. Here's a clip:
    A US study that followed nearly 100,000 post-menopausal women found that optimists had lower rates of death and incidence of many chronic diseases compared to pessimists, as did women who were more trustful of people compared to their cynically hostile counterparts.
    This study goes on to mention that heart disease (which folks with psoriasis are more likely to suffer from) is one of those conditions that optimists are less likely to die of.

    So if my last post seemed a bit too perky for the subject matter, I'll just say - prophylactics, my friends, prophylactics.

    Tuesday, March 10, 2009

    Morbidity and comorbidity

    The National Psoriasis Foundation recently headlined a news article about the long term risks of psoriasis because of its highly inflammatory nature. At the recent Annual Meeting of the American Academy of Dermatology, Dr. Joel M. Gelfand (a dermatologist) explained:
    that for the last two decades, research has shown that excessive inflammation is a critical feature of psoriasis... Excess inflammation also is present in other common conditions, such as hardening of the arteries, heart attacks, stroke, obesity and diabetes - which may explain why some psoriasis patients may be at an increased risk for developing these other serious conditions.
    He goes on to say that people with severe psoriasis are likely to die 5-7 years earlier than those without.

    Upon reading this, I went racing off to PubMed to try to locate some of this comorbidity research that Gelfand is talking about (especially the stuff that says I'm gonna croak soon), and ran across this 2008 article. Here are some highlights from the abstract (italics mine):
    The risk factors of cardiovascular disease and other disease comorbidities appear to be more common in patients with psoriasis compared with the general population. To support this concept, the association between psoriasis and cardiovascular disease and other comorbidities was analyzed... from 1127 patients with psoriasis and a matched cohort of nonpsoriasis patients. Psoriasis patients were significantly more likely to have cardiovascular comorbidities... compared with nonpsoriasis patients. Other comorbidities significantly associated with psoriasis were arthritis, depression, sleep disorder/insomnia, chronic obstructive pulmonary disease, and gastroesophageal reflux disease. Responses to this large survey confirm that patients with psoriasis have a higher rate of cardiovascular risk factors and other comorbidities compared with patients without psoriasis.
    Wait, wait... now I'm confused. Because I have psoriasis, I'm more likely to have arthritis? So...am I a patient with psoriasis, and the psoriasis is manifesting itself through the comorbidity of arthritis?

    Or, am I a patient with psoriatic arthritis, which is an inflammatory condition similar to rheumatoid arthritis, but I also have some skin stuff going on too??

    It's all just so blurry, and leads me back to questioning the diagnostic process again. I think I'm going to go back to reading those autoimmune books. While there's still time.

    Monday, March 9, 2009

    N=1 - Oy, I'm schlepping

    I have nothing witty or informative to say today. I appear to be stuck in an immune-deprived vortex - I'm still sick. This isn't a flare - it's the flu. It has been 2 1/2 weeks of this. Cough, runny nose, worn out.

    So here's the vortex.
    • I can't take my Humira while I'm sick, because it dampens my immune system, and potentially prolongs any illness/infection I might have.
    • BUT, I can't take my Humira while I'm sick - I'm 8 days overdue for my shot. So far, I'm not in terrible pain, but I can feel the arthritis starting up in my hips and toe.
    My drug is making me better, and my drug is keeping me sick. This is a fascinating vicious circle.

    Friday, March 6, 2009

    What am I hiding?

    Even after 38 years with psoriasis and 15 years with swollen arthritic knees, if someone asked me if try to hide the physical traces of my disease, I would deny it outright. In my idealized view of the world we should be judged on who we are, not on how we look. For the sake of my daughter, I'd like to think that I live this ideal.

    But truthfully, I do hide.

    I didn't recognize how much until I read this article from WebMD on how to camouflage your psoriasis or psoriatic arthritis. I was truly surprised to realize that I do use many of the tricks recommended in this article. My wardrobe is the offspring of embarrassment and years of trial and error. I don't wear dark colors often. I won't wear shorts - haven't in years, because my knees are so huge. I wore long gloves at my wedding to cover my scabby elbows. As for cosmetics - well, that secret will stay with me.

    I'll resist the urge to write a pedantic paragraph about women's obsessions with our body images, the powers of marketing, modern feminism, and "Our Bodies Ourselves". You have all heard it before, and I'm sure you'll just agree with me.

    Instead, I'll just end with a question - why do we feel better physically when we look better?

    More power to Tim Gunn.

    Thursday, March 5, 2009

    Project Runway meets Psoriasis

    It's my blog's body image week, and talk about great timing. Yesterday, Amgen and Wyeth (two big pharma companies) and Tim Gunn, of Project Runway, announced that they are launching a campaign called Addressing Psoriasis. This campaign will help people with plaque psoriasis learn more about their disease and feel better about how they look and dress.

    WOW! There's going to be a fashion show! How much fun is this? Here's a blurb:
    Addressing Psoriasis™, [is] an awareness campaign designed to help people with plaque psoriasis get more information about managing their disease and feel more confident in their everyday style. Dermatologist Susan C. Taylor, M.D., and Gunn are working together to encourage people with plaque psoriasis to visit a dermatologist and take the first step in managing their condition...

    The cornerstone of the campaign is a contest to recognize people who have moderate to severe plaque psoriasis but who try not to allow the condition to inhibit their personal style. Individuals 18 or older with moderate to severe plaque psoriasis are eligible to enter for a chance to participate in the Addressing Psoriasis™ Fashion Show hosted by Gunn in New York City on Sept. 2, 2009. Eight winners will walk the runway and help raise public awareness of this condition.
    Of course, I think this is fabulous. HOWEVER, I am hoping Tim & co. will push the envelope and address Psoriatic Arthritis body image challenges as well. We wanna know: how do you look great in a wheelchair? How do you dress up or play down a cane? What kinds of shoes are sexy but comfortable?

    Congrats to everyone involved. Just please don't forget your ugly stepsister.

    Wednesday, March 4, 2009

    "Does this disease make my butt look big?"

    After finding that sad article yesterday about how depressed we Psoriatics are about how we look, I was determined today to find some hopeful and helpful articles on Psoriatic Arthritis and body image. I've already learned two things this morning, and it's not yet 9AM:

    1) when you Google "arthritis and body image", you sure find out a lot about arthritis and sex. Yowza. More power to us.

    2) I do find that Psoriatic Arthritis is like the ugly stepsister of Rheumatoid Arthritis (and Psoriasis) in the research world. There is so much more about RA than PsA or Psoriasis - it can be frustrating (thus, this blog). However, body image is one of those many topics that seems to apply well to both forms of inflammatory arthritis.

    I also found a good article, very cognitive behavioral, about how to change your thinking about your body when you are beaten down with arthritis. I liked a lot of what it said, especially this section:

    Starting to Change Your Body Image

    • Better Self-talk - Would you continue to be friends with someone if every time they saw you they said, "Your rear end is the size of Texas?" No. But do you do the same thing to yourself every time you look in the mirror, criticizing some body part? You need positive self-talk, not negative self-talk. Don't give yourself permission to insult yourself.
    • Accepting Physiology - Hormones may influence your moods and cravings; illness may alter your functional ability and/or body size/shape; genetics give you a uniqueness you may not be able to change.

      --Remember the Serenity Prayer - "Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."

      --Be realistic - Yes, there are things you can change, but you must be realistic.
    I'm officially encouraging all of us arthritics to get out there and work it. Me, I put on my tight green sweater and some nice earrings. I even fixed my hair up pretty. Too bad my husband is out of town!

    Tuesday, March 3, 2009

    I (don't) feel pretty, oh so pretty!

    I've been saturating this blog with information about medications and the science behind autoimmune diseases lately. It's fascinating stuff, but dealing with medications is only a small fraction of the Psoriatic Arthritis experience. The disease changes the way we move, plan, play, and think about ourselves (here's a great story about a brave woman with PsA). And that's even when we're well medicated.

    For some reason, for the past week I've been dwelling on PsA and what it has done to my body image. I know that when I feel stiff and in pain, I don't feel pretty. I don't like the way I look when I hurt physically, I've realized. Why is that? I bet that's a common feeling for those of us out there with PsA, RA, all the other A's. Plus I have psoriasis to boot, and those red scaly patches are not the most gorgeous accessories.

    So I went hunting for some stuff on Psoriatic Arthritis and body image, and stumbled upon this article, which is just as informative as it is depressing. It is essentially a rundown of the low quality of life that people with Psoriasis have - and how to recognize the depression, social avoidance, negative body image and suicidal tendencies in some people with Psoriasis. The article addresses the fact that shame and disfigurement experienced by some sufferers can cripple many aspects of their lives. I have experienced some of this myself, and I can't imagine it with a worse disease course.

    I'm going to spend a little more time this week looking at PsA, Psoriasis, chronic illness and body image. I do choose to live in hope, and maybe I'll find some interesting ideas to share. Until then... bring on the drugs. Maybe they'll make me feel prettier.

    Monday, March 2, 2009

    Why am I so tired?

    I'm REALLY tired today. I have the cold that won't quit, and the Humira has short-circuited my immune system so I'm not fighting the cold off as well as I could. Ironically, because I'm tired, I'm having a hard time getting the motivation together to write about an article on fatigue and inflammatory illnesses that I found last week. But this is really cool science... I've been excited to share it.

    In short:
    Although the brain is usually isolated from the immune system, the study suggests that certain behavioral changes suffered by those with chronic inflammatory diseases are caused by the infiltration of immune cells into the brain. The findings suggest possible new treatment avenues to improve patients' quality of life.
    It was previously thought that immune cells couldn't make it to the brain... but this study shows that in folks with inflammatory illnesses, white blood cells called monocytes do get up into our noggins and make us feel sick. The researchers in this study were able to reduce "sickness behaviors"(fatigue, malaise, loss of social interest) in sick mice by blocking monocytes from the brain. And one way they were able to block these monocytes was by blocking TNF signals, which as we know is part of what Humira does.

    I love the idea of these little mice suddenly exhibiting social interest. What, are they making martinis? Playing bridge? At least now I know that my Humira is making me sick and outgoing at the same time.