Go ahead. Dream.

Hi Team. Sorry for the long absence here in blogtown. (Although, I must confess I do feel a bit egocentric thinking that anybody may have missed me. Maybe I just missed myself.) But I'm sorry especially to any new readers, who must think I'm tremendously lame.

As many of you know, I started this blog on a kind of a of a dare. One blog post a day for 60 days, to raise money for a favorite non-profit. And I did it, and it was fun, and I kept writing.

So I decided to do it again.

I took a vacation in November; not from writing, but from this blog. I got my last Remicade treatment at the very end of October - and it worked, thankfully. So in November I did something I've really wanted to do my entire life, but never had the courage to.

I wrote a book. A 61,000 word book.

National Novel Writing Month is a yearly adventure undertaken by many, many crazy people (this year, over 170,000) who attempt to write a 50,000 page book in a single month. The book has to be fiction, and it has to be from scratch, but it doesn't have to be any good. Thus, I qualified.

Writing a book has always been a dream for me, a dream I never thought I could achieve. I started the blog in part because I thought I was too sick to write a whole book. My disease kept getting in the way of my dreams. When your hands feel like flippers half the time, a keyboard does not look like your friend.

But the motivation to write overcame my fears, and I just decided to do it. The worst that would happen is that I would fail, and only my family would know about it.

But I didn't fail. Yes, I'm exhausted, and my hands and elbows hurt like anything. But I have a book now, that I can edit and mess with and hopefully, someday, maybe, publish.

I wanted to share my success with you because many of you suffer the way I suffer, and bounce from medication to medication, and think your life is doomed to be lived in a box of pain and fatigue. Many of you have given up dreams.

I'm here to tell you you're not in a box. You can do it. Go ahead and dream. I dare you.

Article on Diet and Autoimmune diseases

Sorry for the delay - I said I would post this last Friday, but apparently, when I say I'll do something tomorrow, it means I do it in a week. Lets call it arthritis standard time (AST), and move on.

So, here it is. Researchers have found a link between autoimmune disease and diet. An article describing these findings was published in the journal Nature last month. (For those of you who may not know, Nature is super-dee-duper prestigious... if you can make it there, you'll make it anywhere).

Here's the dumbed down version for us mere mortals. In short, researchers in Australia found that fiber in the diets of rats supports immune cell functioning, and a lack of certain kinds of fiber can make those cells go funky. Here's a quote:

Working along with PhD student Kendle Maslowski, Prof Mackay investigated the operation of an immune cell receptor known to bind with "short chain fatty acids" - what fibre is reduced to once processed by bacteria in the gut.

This broken-down fibre was found to "profoundly affect immune cell function", Prof Mackay said, and without it the immune cells appeared more likely to go awry....

"When (immune cells) go bad they cause inflammatory diseases, so asthma, rheumatoid arthritis, inflammatory bowel disease ..." Prof Mackay said.

"We think one of the mechanisms for their normal control is short chain fatty acids binding to this receptor.

"And if we were to speculate on the real significance of this, we believe firmly that the best explanation for the increase in inflammatory diseases in western countries ... is our changes in diet."

Dude. This is big. The link between autoimmune disease and diet has not been taken as seriously by the mainstream research community. Yet those of us who have tried elimination or autoimmune diets have seen good (if not complete) results. I find this finding thrilling - I'd love for more serious, well funded research to look into this link.

N=1: Is this my fault?

I'm writing this from the Remicade chair, 4 weeks after my last dose. As many of you know, the ideal timing is 8 weeks between doses - and generally I feel great after my infusions. But this last dose didn't "take". My ankle and toe are in constant pain, my elbows and hips are sore, and I'm very, very fatigued.

I'm desperately hoping this isn't the first sign of a downward trend. If my honeymoon with Remicade is over, then in a few months I'll be back to the drawing board... again. The fab rheumatologist is even talking methotrexate again - God forbid. I hate that stuff.

When you have a chronic illness, and you feel bad... wait, scratch that, I'm generalizing.

I have a chronic illness, and when I feel bad, I blame myself for my illness. Everyone has some crazy, and this is clearly my crazy talking. I know I can't control my illness. Yet, somehow, those taunting, bitter voices in my head take over and point the finger: at my diet, at my rate of exercise, at that night (ok, nights) in England 20 years ago when I drank way too much, at my lack of blogging. (Because, after all, blogging does prevent psoriatic arthritis). Ha.

I have this elusive feeling that if I could just do ________ (fill in the blank, crazy voices) I would feel better. I just wish I could figure out what _______ is.

So, I'm going to start back on the autoimmune diet, in a week, once this Remicade does has or hasn't kicked in for sure. I'm reading Pagano's book "Healing Psoriasis". I don't know if it will work. But it is something active I can do, instead of being a passive participant on this ride.

I'm falling asleep now (Remicade does that to me), but tomorrow I'll post this great article I just found about how diet can affect autoimmune illnesses. Sleep is good for me too, right?

More on calorie restriction

Just wanted to point out that today's New York Times Magazine has an article on the Calorie Restriction Diet, in case folks want to read more on the current thinking on this health topic. (This is in reference to my previous post).

Here's the link.

BTW - the whole magazine is about food... really good stuff!

I'm going on a diet, and here's why...

An article in the New York Times caught my eye today. It inspired me to get out of my back to school and so much to catch up on so why the heck did I get that puppy when the cat died funk, and start writing again.

(yes, we got a puppy. By the way: puppy + psoriatic arthritis = really achy joints, a few second thoughts and lots of laughing. Back to the science - more on puppy later.)

The NYT's front page story was on autophagy, which was described as:

Our cells ... perpetually devouring themselves, shredding their own complex molecules to pieces and recycling them for new parts.

Apparently, we all have proteasomes and lysosomes, two types of small structures inside of cells that are recycling machines. They work day and night eating cells and spitting out the remains, which are used to build new cells. One scientist was quoted saying that we get an entirely new heart every 3 days due to the continual cell destruction and re-creation. WOW.

Scientists are now starting to believe that autophagy (or the lessening of autophagy as we get older) has a lot to do with the development of Alzheimer's and cancer. While autophagy doesn't necessarily cease as we age, it slows down, causing more and more cells to live longer and therefore mutate, leading to illness. The current thinking is that if we can control autophagy, we may live longer.

OK, fellow autoimmune specialists... doesn't "autophagy" remind you of another cellular process we're all really familiar with? Isn't autoimmune disease caused when our immune system (different cells, I know, but...) destroys our own cells mistakenly? Couldn't autoimmune disease be related to autophagy? And, could this slew of new research also support research in autoimmune disease?

It turns out that scientists are starting to connect the dots between autophagy and autoimmunity. While the NYT article doesn't mention autoimmune disease, there is some great work out along these lines:

The connection between autophagy and immunity should be emphasized in that autophagy contributes to the defense against microbial agents [5, 12], promotes antigen presentation through MHC class II [13, 14], is induced by cytokines [5, 15, 16], may regulate T lymphocyte survival and function [17], and may be stimulated by serum autoantibodies [18].

This is from an article by a ton of docs (Ana Lleo, MD, Pietro Invernizzi, MD PhD, Carlo Selmi, MD PhD, Ross L. Coppel, MD, Gianfranco Alpini, PhD, Mauro Podda, MD, Ian R. Mackay, MD, and M. Eric Gershwin, MD) linking autoimmunity and autophagy in the Journal of Autoimmunity (2007). The article is long and complex, so I'll cut to the chase. They conclude:

In the context of immunity, there is clear evidence for participation of autophagy in intracellular defense against infectious agents and also perhaps, in disposal of unwanted e.g. misfolded self proteins, although there is no evidence yet for an ensuing inflammatory response to such disposal.

As always, lots to learn on this topic, but there are some smart people out there trying to put all these pieces together. I'll keep watching, and will write more when I learn more.

OK, so I can hear you asking: "why the diet?".

Here's why. Autophagy kicks in when our bodies have fewer new proteins coming in... you've all heard of the process where our body starts "eating" itself when it has less food. And it is well documented that people on permanently lower calorie diet are healthier... turns out semi-starvation is kinda good for you. Scientists think that inducing this "cannibalism" increases the destruction of older, dysfunctional cells - those that cause Alzheimer's and cancer. So I wonder if the same is true of autoimmunity. In short:

Would a lower calorie diet induce autophagy, and help our bodies destroy those cells that are mis-firing and causing our immune systems to act up?

BTW, because of the dog, I've lost 3 pounds, just from walking. I look fabulous. And if I just stop eating, I'll apparently be able to walk the dog 'til I'm 150.

Where's the leash?

N=1 - R.I.P. Autoimmune cat

We lost our beloved George today. Some of you have asked about him lately, cuz I wrote about him earlier in the year. In short, our 14 year old cat became ill this winter, possibly with an autoimmune type disease, at about the time my PsA was flaring and my husband's Crohn's was acting up. I've been trying to connect the dots between the three of us and our diseases, to no avail. Sadly, this week, he got too frail and dehydrated to have any quality of life anymore, and we took him in this morning to be put down.

My husband and I have had a lot of talks about euthanasia these last few days, as we've had to make this decision. When are you, or your animal, too sick to go on? How much pain is too much pain? What is quality of life? Both of us are looking at a future of increasingly bad health... but we don't want to be "put down" (or at least we can't imagine wanting to be). Why is euthanasia o.k. with an animal and not a human? When is it o.k. with a human?

I have no answers, no strong stance to take today. Just a few tears, and a little clump of white fur, shaved from George's leg before they gave him the injection. I stole it from the procedure table before we left the room - it's sitting forlornly on my desk, in a ziploc. How un-ceremonial.

He'll be missed. He was family.

Getting up to speed on health care reform...

I've been out of the loop for a couple of months - being home with the kids has taken more out of me, mentally and physically, than I expected. School started yesterday and my days are empty again - how can it be that I already I miss the noise, the fighting and the noontime cuddles?

But I've also missed a lot of the health care debate - and it's important for me to get up to speed. Psoriatic Arthritis is a chronic condition... and many of us with PsA are looking at huge medical and drug expenses for the rest of our lives. The decisions being made right now in Washington could deeply influence my health (and many of yours) for the long term.

So, yesterday, at my favorite gluten free cafe, I turned to the conservative writers that every liberal loves to love (Andrew Sullivan and David Brooks). And they both spoke very highly of Atlantic Monthly's cover article, called "How American Healthcare Killed My Father", written by David Goldhill... they both suggested that Obama should read it as he moves forward with health care reform.

So I read it too... and I hope the president reads it. It's long. It's heartbreaking. It's complicated. And it is really good. Goldhill pushes past the current focus on financing health insurance, and digs deep into what is really faulty at many levels with America's health care system, including:

A wasteful insurance system; distorted incentives; a bias toward treatment; moral hazard; hidden costs and a lack of transparency; curbed competition; service to the wrong customer. These are the problems at the foundation of our health-care system, resulting in a slow rot and requiring more and more money just to keep the system from collapsing.

And his solution goes much farther than the solution Obama presented last night - he would like to see more consumer-centered health care system which would:

not rely on a single form of financing for health-care purchases; it would make use of different sorts of financing for different elements of care—with routine care funded largely out of our incomes; major, predictable expenses (including much end-of-life care) funded by savings and credit; and massive, unpredictable expenses funded by insurance.

If you skip to page 6 of this article, you'll find thorough description of his plan for a more consumer driven health care system. It isn't a perfect plan (which he admits) but it is a compelling one. As someone who has huge monthly medical bills, I was first terrified by his plan - what? I'd pay for my Remicade out of my savings? But the more I read, and the more I thought about my year and a half trying tackling treatment for Psoriatic Arthritis, the more his plan made sense. Goldhill calculates that if we took all the money we spend in our lifetimes to pay for health insurance and sock it away, we would have over 1.7 million dollars each, to spend on our own health care. And if we have control over where we spend that money, hospitals and clinics would have to become more competitive (and transparent), raising quality.

Imagine, all of us with Psoriatic Arthritis, with 1.77 million each to spend on our health care. What changes could we make, in the quality of our clinics, our rheumatologists, the drugs we're offered, merely by having more choice? I'm getting all tingly just thinking about it.

Take a look at the article. It's a revolutionary idea, and educational. I liked it.

N=1 - Remicade update

Ok, I'll be honest.

I love the mousie.

I was pretty worried about Remicade - I think the whole idea of having an "infusion" was scary, and made me feel sicker. Sitting in a chair for 2 hours pumping in a mystery drug sure smacks of big illness.

But the truth is, I have big illness, something I am violently reminded of whenever the Remicade wears off and the Psoriatic Arthritis takes over.

For me, Remicade really works. I'm riding my bike. I'm running through the forest chasing my son. The other day, in the garden, I found myself squatting to determine whether a new seedling was a weed. It was, and half-way through pulling it I realized I was squatting. I haven't mindlessly squatted in years. A silly thing to celebrate, but celebrate I did.

My point, however, is not that Remicade works. My point is that Remicade works for me. I tried Methotrexate, Diclofenac, Humira, even crazy levels of Ibuprofen. It has taken a year and a half and 3 rheumatologists to find something that works for me.

So don't give up. I now believe that you can feel much, much better, with whatever is the right treatment for you. Be patient, give each thing a decent try, and don't settle for less than remission until you have to. (I was on Humira for almost 6 months, and as regular readers know, I thought I was "better enough". It took my savvy rheumatologist reading this blog, and dragging my butt back in to her office, to make me realize that I was settling for less than remission).

Don't give up. You too will squat again. It feels great.

Scientific American Article on Celiac Disease and Autoimmune Illness

I mentioned a week or so ago that there was an article coming out in Scientific American about celiac disease, and how it can be used as a model for understanding other autoimmune illness. Here's the link - it's worth the read, even if you aren't a celiac.

The US House (and NPF) does good

I got this email today from the National Psoriasis Foundation - cause for celebration! At the bottom of the email is a way to get involved...

Breaking news: The House votes to appropriate $1.5 million for a psoriasis patient registry. Thousands of psoriasis advocates celebrate nationwide.

On Friday, after months of effort by the National Psoriasis Foundation and its network of 55,000 advocates, the U.S. House of Representatives appropriated $1.5 million to begin the first psoriasis patient registry at the Centers for Disease Control and Prevention (CDC).

This is a tremendous victory for everyone with psoriasis. Having a patient registry will begin to answer some important questions including, why are people with psoriasis at higher risk of developing other serious conditions such as diabetes and heart disease?

Over the past several months, members of the Psoriasis Action Network sent more than 3,000 messages to their members of Congress urging them to increase the investment in psoriasis research by the federal government. The cause was elevated on Capitol Hill further by singer LeAnn Rimes' trips to D.C. in March and July to advocate for the $1.5 million appropriation.

In order for the $1.5 million appropriation to go into effect, it must clear a few more hurdles. First, the Senate must approve its version of the funding bill. Then the House and Senate must agree on the appropriations, and lastly the bill is sent to the President to sign.

We need you to keep up the momentum. Contact your member of Congress and ask him or her to support psoriasis legislation. Get started.

Is Psoriatic Arthritis underdiagnosed?

We all know the numbers - it is estimated that only 10-30% of people with Psoriasis will be diagnosed with Psoriatic Arthritis. But is the low rate of co-incidence because people with P(soriasis) don't usually develop Ps(oriatic) A(rthritis), or because many people with P don't realize they also have PsA? I tend to think the latter, and I think research is starting to back me up.

A recent Canadian research survey on people with Psoriasis (not Psoriatic Arthritis), called the SKIN study (cute) suggests that PsA could be widely underdiagnosed. The article I read about the study states:

The SKIN survey reveals that half of all respondents [with Psoriasis] reported that they had developed joint pain or stiffness, but only 18 per cent of these respondents had ever received a diagnosis of psoriatic arthritis.

and...

Respondents reporting no psoriatic arthritis diagnosis indicated that they experienced stiffness in the knees, shoulders and hips (48 per cent), followed by pain or stiffness in the finger joints (38 per cent) and toe joints (23 per cent).

Underdiagnosis concerns me for two reasons - firstly, of course, I don't want anyone else to experience the pain I experience. But secondly, fewer people diagnosed with PsA means the research community will be less likely to study PsA.

A while back I wrote about the lack of research and basic information about Psoriatic Arthritis, as compared to Rheumatoid Arthritis and Psoriasis. Here's the link.

Here's my point: fewer scholarly articles on PsA will lead doctors to make fewer diagnoses, AND, the lack of PsA diagnoses certainly has an effect on how much research is undertaken.

So if you're out there with P, and think you have PsA, please consider getting a definitive diagnosis.

You know what they say about the squeaky wheel, after all. I'm up for some grease (and I'm not talking another ointment).

n=1: Where have I been?

Ok, quickly, sorry, sorry, sorry. Somehow, summer vacation is kicking my tush! I'm having a lovely time home with my kids, (one blessing of having a disease that made me decide not to "work" anymore). But at the end of a day of lunch making, swimming lessons and play-dates I'm wiped, and I have an attention-span of about 10 minutes. Exhaustion and blogging don't mix well!

But I have a lot to write about - first, of course, about celebrities (Michael and Lupus, Cameron Diaz and Psoriasis, and our home-girl LeAnn in D.C.). In the case of the first two, I wonder: is any publicity good publicity when it comes to autoimmune disease?

And I also have been following all the recent developments in Celiac Disease (my other autoimmune condition). Scientists have recently demonstrated that it is on the rise, and Jen Cafferty at the Examiner.com reports that the August edition of Scientific American will include some significant findings about Celiac Disease that relate to other autoimmune diseases. Dr. Alessio Fassano states, (as cited in Cafferty's article), that:

“Celiac disease provides an enormously valuable model for understanding autoimmune disorders because it is the only example where the addition or removal of a simple environmental component, gluten, can turn the disease process on and off.”

I'll work on posting some more on these topics, and others, as soon as my hair dries from the pool. Meanwhile, I'm working on a new motto: Summer parenting with an autoimmune disease - the toughest job you'll ever love.

Acetaminophen and your liver (and your pain)

I'm sure by now everyone has seen that a federal advisory panel advised a ban on Percocet and Vicodin - both drugs that combine Acetaminophen and opiates. Here's a link to a NYT article. They made this recommendation because:

High doses of acetaminophen are a leading cause of liver damage, and the panel noted that patients who take Percocet and Vicodin for long periods often need higher and higher doses to achieve the same effect.

The panel was only an advisory board to the FDA - the FDA has yet to make a decision, btw.

It is critically important to those of us who live with chronic pain to understand this potential ban - not necessarily because we are all on Vicodin and Percoset, but because of the reasons the panel wants to ban them.

The concern is that people taking combination drugs don't understand that they are getting fairly high doses of acetaminophen in each Percoset or Vicadin pill, and while they are following the prescribed doses for these painkillers, they might also take a Tylenol too (which is acetaminophen) as well, thinking "well, it's an over the counter drug... it can go with this narcotic". Worse, some people think that if the doctor says take 2, it's safe to take 4. I fall into this second category. I tend to think that doctors under prescribe. I rarely take more than is on the bottle, but when I have, I don't worry.

We should all worry. Here's the money quote:

While the medicine is effective in treating headaches and reducing fevers, even recommended doses can cause liver damage in some people. And more than 400 people die and 42,000 are hospitalized every year in the United States from overdoses.

Please, just think before you pop a pill.

Psoriatic Arthritis, Menstruation, and Remicade

My periods are funky. I'm just to go ahead and say it "outloud", after months of avoiding the topic for fear of grossing y'all out (yes, I'm talking about you, dear squeamish reader - you know who you are!)

But it can't be avoided now. The story of my "little visitor" has become too compelling, personally and scientifically, to make light of. So here goes:

For about three and a half years (from just before the time I developed psoriatic arthritis), I've had very heavy, and LONG, menstrual bleeding. My visitor was a terrible guest. Stayed too long (two weeks or more) and didn't clean up after herself.

Then came Remicade. I started Remicade (Infliximab) about 6 weeks ago, and missed my period a week later. Please note: I never miss a period (except when pregnant). Of course I ran off to RiteAid for a pregnancy test, which came back negative. So I waited.

About 4 weeks after my first Remicade treatment, I had a visit, finally, and she was an easier houseguest than I've had in years. Not heavy, not long, just...normal. She practically did the dishes for me.

Now, here's the kicker. The bleeding started again, 4 days ago, right when the second Remicade dose wore off and I started feeling the arthritic aches and fatigue again. This was just two weeks after my last, very late, period. Is it coincidence that Remicade delayed and then "normalized" my period, and the absence of Remicade made me bleed? I think not.

So, as always, I'm turning to the research journals. First, I must give credit to the KickAS website and support group, which had a bunch of useful information in this thread.

It turns out that TNF-alpha has been linked to endometriosis, and is probably involved in the development of ovarian follicles. A fascinating 2004 review article by Sakumoto and Okuda (Journal of Reproduction and Development) states (italic mine):

3. Although the physiological significance of TNF-alpha regulating CL (corpus luteum) function during gestation is still obscure, TNF-alpha may play physiological roles in regulating CL function in the gestation period as well as in the estrous cycle.

Good golly I wish I was a research scientist and understood all of this better. But what I'm getting is: the corpus luteum is a little blister-like object that is formed when the ovary pops out an egg halfway through the menstrual cycle (here's a good diagram about the cycle). It produces hormones that support a potential pregnancy, and it decays towards the end of the cycle if the egg isn't fertilized. What these researchers believe is that the CL formation, and perhaps the entire estrous cycle, are partially regulated by TNF-alpha.

And of course, as we all know, TNF-Alpha is what the Remicade blocks. It's a lead factor in inflammatory arthritis, as well as other autoimmune diseases.

So by my reckoning, for the last three years my little visitor has arrived at the end of my menstrual cycle... she arrives early and dances in the front yard lightly for about a week, but then moves in and trashes the house at about the time I would normally be expecting guests. But possibly, the Remicade has shortened her stay.

(Translated, I think I bleed lightly for the last week of my cycle, when the CL is disintegrating, and then I bleed heavily when my period should start. But with remicade, somehow the TNF-alpha blocking is shortening dear Aunt Flo's visit).

I don't know what to think here, except to feel grateful for a better understanding of why I've had these nasty periods for so long. I don't really know why TNF-alpha affects me in so many ways, but at least I can blame it for my heavy bleeding. And I now have a new topic for reading and speculation about autoimmune illness. Just think...some researchers now think some endometriosis is caused by flaws in the immune system!

I'm also quite curious as to what Remicade has in store for me and my bad house guest - maybe I can close up the B&B for a while.

N=1 - Remicade hangover

Permission to speak freely?

I feel like $h!t. Excuse my French.

A week and a half ago I was running... chasing my wonderful 6-year-old son through the Redwoods in our favorite park. My daughter and I were having dance parties. Working in my garden was easy and irresistible.

And as of 48 hours ago, I can't move. I'm not scurrying. I'm back to creeping down the stairs. Every joint hurts, my hands are back to feeling like flippers, and worst of all, I have new finger joints involved.

I'm back to square 1. Maybe even square 0.

I'm assuming this is the Remicade wearing off. It sure feels like a hangover.

When you have a chronic illness, there is an interesting psychological tendency to believe you do not have that illness during symptom free periods. I frequently get trapped in that delusion. "Maybe I'm really better this time" I've recently been thinking, as I run and play and plant. "Maybe I don't need all these medications... maybe I just need love and seedlings".

My next Remicade infusion, which is Thursday, will be the true test. I hope it makes me feel better. But if it does, it will once again prove that I, indeed, have a chronic illness. I wish I didn't need these constant reminders. But needing to be reminded means I am feeling better. It's a terrible vicious circle...

Bring on the mousie.

Out of the office, but still reading the research links

On my way to another lovely visit with friends - I'm in the Bay Area visiting the pals and family we left when we moved to Portland last year.

Thus, once again, I'm ignoring you, my adored blog.

But I saw this article today and it caught my eye, and I thought I should share it - a new PsA drug that's doing well in clinical trials. Here's a description about why it's different:

Apremilast is a novel, orally available small molecule compound that exhibits anti-inflammatory activities through the suppression of multiple pro-inflammatory mediators including, TNF-alpha, interleukins 6, 17 & 23, and interferon-gamma among others.

Off to more good times - but I'll be back in Portland and posting regularly soon.

Health Care in America, Part II

LILI SACKS, a primary care doctor in Seattle, says she began thinking differently about her work on the day she realized she was beginning each appointment with the words, “Sorry I’m late.”

The above is a quote from a recent article in the New York Times on health care... it is a perfect follow up to the New Yorker article I talked about a few weeks ago. Here's what follows that quote:

Scheduled to see as many as 25 patients a day at a large clinic, she lacked the time for thorough examinations and discussions. Because of this, she said, primary care doctors are often forced to order tests and send patients to specialists.

“Could I have helped some people without specialists and tests? Absolutely,” said Dr. Sacks. “Would it have saved the patient and the insurance company both money? Absolutely. Is the system set up for the best care and cost efficiency? Absolutely not.”

Dr. Sacks said she worried that seeing so many patients would lead to errors.

Much of this article talks about the "direct practice" model of medicine, which for many physicians translates to: each patient pays them a monthly fee, but then gets to see the doc for no cost, including many tests, pretty much as soon as and as often as needed. Dr. Sacks, in this article, switches her practice to a direct-practice model, and speaks very highly of it in the article.

Last year, she moved to a clinic that focuses on longer patient appointments, 30 to 60 minutes. This translates to 10 to 12 patients a day. Patients also communicate directly with her by phone or e-mail.

During those longer appointments, Dr. Sacks can perform basic lab tests and simple procedures, so patients see fewer specialists.

I've been skeptical of this kind of service - worried about an even further separation between the wealthy and the poor in the type of health care they receive. But here's an argument from this article that I think makes a great deal of sense (italics mine):

Dr. Sacks said the financial mechanics of the direct-practice model match her medical goals. When she was compensated based on insurance, she was paid every time she saw a patient. Now, if she can use education and prevention to reduce office visits, she and her patients benefit, she said.

One thing (among many) required to make this model work would be a welcoming atmosphere... a "we want to see you" kind of attitude... at the doctor's office. Preventative care requires a doctor be able to see patients before diseases strike or progress too far. However, I can imagine if I was paying $100 a month for health care out of pocket, on top of insurance, I'd want to feel free to walk into my doc's office anytime I darn well felt like it.

Is anyone using this model? Do you like it?

I'm all about reducing the cost of health care. Imagine if it came with better care too!

Chinese herb may treat psoriasis?

Sorry for the blog silence lately - those of you with kids may understand the end of the school year mania I'm currently living.

But, I did want to throw this out there - an interesting article stating that an herb from the root of the hydrangea plant, which has been used for 2000 years in Chinese medicine, may help treat psoriasis, and RA, and Crohn's, etc.

Here's the link

I may have to go back to my acupuncturist and learn more.

Health Care in America

This week's New Yorker Magazine has a great article on the rising costs of health care in the United States... it's a long read, but a good one. Physician and writer Atul Gawande rips open the dirty secret of (some) doctors over-prescribing procedures in order to make a profit. It is a fascinating read about how the bottom-line can alter the quantity, but not quality, of medical procedures you may be prescribed. Here's a great quote (from a conversation with some doctors in McAllen, Texas, the most expensive place to get health-care in the country):

I gave the doctors around the table a scenario. A forty-year-old woman comes in with chest pain after a fight with her husband. An EKG is normal. The chest pain goes away. She has no family history of heart disease. What did McAllen doctors do fifteen years ago?

Send her home, they said. Maybe get a stress test to confirm that there’s no issue, but even that might be overkill.

And today? Today, the cardiologist said, she would get a stress test, an echocardiogram, a mobile Holter monitor, and maybe even a cardiac catheterization.

“Oh, she’s definitely getting a cath,” the internist said, laughing grimly.

Here's another great snippet - about preventative care in high-cost areas:

To make matters worse, [researchers] found that patients in high-cost areas were actually less likely to receive low-cost preventive services, such as flu and pneumonia vaccines, faced longer waits at doctor and emergency-room visits, and were less likely to have a primary-care physician. They got more of the stuff that cost more, but not more of what they needed.

The article doesn't turn all docs into bad-guys, no worries. But it certainly points the finger at doctors who are watching their personal bank accounts more than their patients' and the country's. It's really worth a read.

N=1 - What I learned in Germany

European travel - well, any travel - can bring the most amazing surprises. Around a corner, you find a quiet courtyard with a fountain that sparkles in the sun. One of your favorite paintings is larger, or smaller, than you expected it to be. Or, sometimes, if you can stop long enough to think about it, you even learn things about yourself...

I'll resist the urge to write a travelogue here; but it was a great trip. I learned a great deal about German history, and how it affects German culture. And, surprisingly I learned a great deal about my kitchen back in Portland, and about my right knee.

As regular readers of my blog know, my primary worry about my trip involved the 4 flights of stairs to my brother's apartment (and my bed) in Dresden. I'd had a lot of pain in my knee before I left; the psoriatic arthritis seemed to have settled into it.

But unexpectedly, my knee felt fine in Germany. The plane trip made me stiff for a few hours, and my hips really ached after a day walking in Berlin. But my knee was no trouble. Sure, I had a prick of pain here and there, but nothing like at home. In Germany I never once pulled out my little travel heat pack, or asked my sister-in-law for ice.

But... within 12 hours of being home in Oregon, my knee started aching again. By 24 hours, the fire was back. Why was I well in Germany, with all the stairs and walking (not to mention the coffee, chocolate and other auto-immune diet no-nos I was consuming)? Why was I hurting back at home?

Scientist that I am, I started analyzing my behavior in my own house, compared to Germany. At home, I'm mom (and wife), and having come home to a sick husband, I was spending a great deal of time in the kitchen... going from stove to sink to counter to fridge to dishwasher... over and over. The first day back I must have spent 5 hours in the kitchen, cleaning, cooking, making lunches, etc.

What I discovered surprised me. It seems that every time I make a turn in my kitchen, I push off with my right knee, and make a counter-clockwise turn. Before I left for Germany, I was cooking, prepping lunches, packing for myself, turning, turning. Coming home, it was the same. But in Germany, I was only walking straight - no twisting. My German family spoiled me and I didn't do a lot of cooking, and I stood still in their tiny kitchen while I did dishes. I walked for miles, but didn't do a lot of pivot turns.

I had no idea my own kitchen was my own worst enemy. I would never have known, if I hadn't gotten away from it, and come back with a healed knee and a new perspective.

So, here's the moral. If something hurts, don't assume that it is just because your disease is taking over. Take a day, and analyze every move you make, like those students in the movie Fame do in their first year of acting class (just watch the movie - you'll know what I'm talking about).

You may learn something. I'm moving slower now, and turning clockwise instead of counter-clockwise whenever I think about it. My knee is better already.

Tscheuss!

Aloe Vera treats Plaque Psoriasis

This just in - a study in Thailand demonstrated that topical aloe vera was possibly a better treatment for plaque psoriasis than topical steroids. Here's the link, and here's a quote from the investigators:

"Although contrary results were reported from two previous placebo-controlled studies, our study showed that aloe very cream was more effective than 0.1% triamcinolone acetonide cream after eight weeks of treatment".

Now, keep in mind that these results did not reach statistical significance. However, the aloe did beat out the steroid in only 8 weeks.

I wonder if my psoriatic arthritis would go away if I started drinking the stuff. Here's a link to a post claiming it would. (this is not a study, though, just an opinion).

I have been feeling like a big chemical cess-pit lately, so this study certainly caught my attention. I like when research proves that natural remedies work - it makes my scientific preferences feel at peace with my hippie soul.

N=1 - Hello again

I'm back!

Back from Germany, where I discovered the pleasure of a new coffee drink, the challenges of Berlin and the sticky hugs of my niece.

Back from my grandmother's memorial service, which was warm and heartwrenching and the fastest trip I've ever taken (Portland-> Walnut Creek-> Portland in 12 hours).

Back from a week of worry - my husband has been slammed with his worst Crohn's flare yet. I had to shorten my Germany trip, and come home to a skinny, tired guy facing a lot of scary medical choices. The kisses I got from him and my kids made the abridged trip worth it, though.

And, back from my second Remicade treatment. WOW. Try being jet-lagged, in mourning, and then infused with that sleepytime drug. I think I slept for half of last week.

But I've missed the blog, I've missed the chats, and I've missed putting the random thoughts in my head on the screen .

I hope you're all still out there.

I'm back.

Of bathtubs and berlin

I will upload pictures soon, but wanted to share that I had a fun tub experience in Berlin. My friends who are renting an apartment in Berlin moved into their sight unseen place and discovered a shower stall that is about 3 1/2 feet deep, with no entry. They have a tree-stump next to it that you can use to climb up and hurtle yourself into the shower "pit".

I was very intimidated by this tub! How was I going to get over my own personal Berlin wall?

Well, I managed. Some stump climbing, some sliding, some swinging of legs and I was up and over. Back out was easier than I thought it would be too.

But it made me think - before you assume that you will have easily accessible bathing facilities in Europe, call ahead. I would guess that while this tub is unusual, it is not one of a kind.

Back in Dresden - the 4 flights of steps are looking easier than the tub!

Ouch! Those fancy sidewalks hurt!

Germany, at least Dresden and Berlin, has an obsession with making their sidewalks interesting to the eye and to the feet. In the last few days, I've walked on cobblestone, brick, flat slabs, small rocks embedded in concrete, and on and on.

I've learned something.

American sidewalks have made me lazy - I don't pick up my feet very much... I shuffle, I think. The reason I know this now is because the first few days in Dresden I tripped constantly, twisting my ankle, jamming my knee.

Ouch.

High stepping time. I've gotten much better at lifting my feet higher when I walk. And looking down. And boy those German sidewalks are pretty.

Morning blues - jetlag and psoriatic arthritis

A quick note about time, and aches and pains...

For the last few days, I've found that while my brain is up and ready to go at 9am Germany time, (midnight back home) my body isn't. It's the strangest thing. My sister-in-law and I will be up, dressed, and eager for our next shopping or sightseeing adventure, and suddenly I'll feel like I'm walking through quicksand. It's as if my body is asleep while my brain is awake. All my bad joints hurt, I'm terrifically fatigued, and I need breaks more often than I'd like to admit.

By about 2PM, I'm just fine and ready to go anywhere, and feel like I could walk for hours. (I can't, but I like to pretend).

I do wonder if my body just isn't adjusting to the jetlag as well as my brain is! I've traveled overseas several times before (including a year and a half ago, before my disease really kicked in, but I was already old - 40-something) and didn't have this odd problem.

I hope it wears off soon. I'm off to Berlin tomorrow and want to do lots of walking. Fortunately, my morning will be spent on the train.

Evening in Dresden

Did I mention that my brother lives at the top of 4 flights of stairs? We just walked to a lovely dinner, and then walked back (about 6 blocks), and then had to tackle the stairs. Oy gevault.

Fortunately, I'm not in too much pain, because I did time my anti-inflammatory correctly. I have to take it every 12 hours, and I usually take it with breakfast and dinner. But, Germany is 9 hours ahead of Oregon. So, I could either take extra diclofenac - basically, take my usual Oregon evening dose, and then my morning Germany dose - but those would only be 3 hours apart. I opted for less, rather than more. At about 6:00 AM in Germany, which was 9pm in Oregon, I took my usual evening pill, and counted it as both Friday night and Saturday morning.

This may just be too complicated to follow, but the lesson here is... don't just take for granted that it will be easy to think about medication and time changes. If I miss an anti-inflammatory, I hurt terribly, and I really don't want to be hurting with those stairs and my toddler niece. Think about your medication when you travel, and do the math. I brought one of those little pill cases with a compartment for each pill, and I'm glad I did... I can easily tell if I miss a dose, which is important when you have jetlag!

Tchuss! More tomorrow!

in the airport in frankfurt

Ok, this will be a badlly typed entry because in germany the kezboard is different!

Just a few thoughts on international travel with psoriatic arthritis. seatguru.com, seatguru.com, seatguru.com, and sometimes even this doesn´t help!

my seat reservation got changed, and I was stuck in an aisle, with the tv box under the seat. aisles arenät ssupposed to be bad, right? but my bad knee couldnät stretch out! so, i recommend that when one tries to fly long distances, think hard about your needs. my right knee needs to stretch. fortunately, i was able to switch (thanks to a man who panicked and needed to get off the plane - we had to go back to the gate while he freaked out) I got a window on the right. my leg could stretch againszt the wall of the plane.

more later! off to buy haribo - autoimmune diet is out th e window

Have psoriatic arthritis, will travel

My Remicade live-blog was so successful, I think I'm going to make a career out of internet stunts. What will I do next? Post videos of my cortisone shots? Make a huge public sculpture out of pill bottles and ice packs in Washington D.C. and write about my subsequent dinner with the Obamas? Crash the International Conference on Psoriasis and Psoriatic Arthritis in Stockholm with my laptop?

Well, actually, that last one is close. In all seriousness, I'm leaving for Germany tomorrow. I don't know what's going on with my knee, but the pain has been fierce, and I'm a little stressed about travelling with it feeling like this. BUT, I'm not going to let it ruin my trip. I have sights to see and a 17 month old niece to play with. I'm not gonna let the disease stop me.

Starting tomorrow I'll be blogging about traveling with active psoriatic arthritis (whenever I can find an internet connection and a free moment). I'll catch you all up on what's going smoothly, what's unexpected, and what's a pain. Things like: how to keep my joints from freaking out on that 12 hour plane trip, how to keep track of my pills on a different time zone, how to make the most out of a city when I can't walk too far, and how to ask "is that gluten-free" in Deutch!

Join me, and enjoy!

Auf Wiedersehen

Rip Van Winkle - what I missed while I was sleeping

I'm waking up from my Remicade daze and greeting the world again, and I'm realizing how much I've missed in the last few days. I don't have time to pontificate on all of these bits and bobs, but I wanted to share some news and some links, in case any of you find them as fascinating as I do. Here they are:

• A study at Stanford just found that narcolepsy is an autoimmune disease. Check it out
• Another study just got us one step closer to proving that Epstein-Barr virus can cause multiple sclerosis, another autoimmune disease. Check it out. (I have written about EBV in the past, here)
• And finally - here's a study that shows that in the average age of breast development has fallen by one year in the last 15 years. So in the early 1990s, European girls were getting their breasts a year later than they are now. Researchers think this is due to environmental triggers. Check it out.

Why are these three articles interesting? To sum up: more and more diseases are now thought to be autoimmune (like psoriatic arthritis), we can now prove that environmental triggers (like EBV) might cause autoimmune diseases, and we can now start guessing that environmental toxins are increasingly affecting our bodies, and our children's bodies.

Ok, have fun with that bedtime reading.

I'm gonna go have a glass of organic milk.

The morning after

I have a Remicade hangover. I slept terribly - woke up every 45 minutes or so after 3AM, thinking I was WIDE AWAKE and ready for the day, and then would fall right back asleep. Can't get the tea into myself quickly enough this morning... I'm tired, just a bit groggy.

And I still feel sloshy. Can anyone identify with that? I just feel a little more... liquid.

I'll write something intelligent later. More tea.

Waking up

Ok - we're now 7 hours post infusion. I started feeling better at about 5:30 - got up from in front of the TV, got a child from a friend's house, made dinner. I still feel sloshy, but not so sleepy.

I can do this every 6-8 weeks... but I do need to make sure that I don't drive home in traffic and that I have not much going on for the rest of they day...

Lets see what tomorrow brings, mousie.

Note to self - don't just buy the lattte, drink it too...

Ok. I'm home. Can't type Lattttttte, apparently. But home.

That was a fun little adventure. I feel sloshy, and sleepy. My eyes are half open. The couch is looking pretty comfy right now.

I'll post again before bed... I'm curious about how long this bleariness will last. It is just like the medical assistant warned me yesterday - like how I feel when I'm having a flare, without the pain. Just the fatigue.

Goodnight.

All done, out of here!

106/58... my new blood pressure. "Nice and relaxed" Karen 1 says.

And I'm done! I'll put up another post in an hour or so after I'm home... just so y'all know what the after effects feel like...

Thanks for reading!

just got the "good beep"

"AIR IN LINE" is nothing to worry about here. It means I'm done! Whoohoo.

Well, sortof. I'm still sitting here, IV in, pillow on lap, but the machine is done!

I'll write one more post before I waltz (stumble) out of here and find a coffee...

on mouse juice and men

Ok, so why am I joking about meeses?

Here's a clip from About.com about Remicade:

• Remicade uses human and mouse proteins to create a chimeric monoclonal antibody.
• Enbrel is derived by introducing human DNA into Chinese hamster ovary cells and creating a genetically engineered protein.
• Humira uses fully human proteins and phage display technology to produce monoclonal antibodies.

In case you were wondering. I've not tried hamster yet, but I may get there.

250 ml!

20 minutes of this final push, and I'm done! The machine attached to my bag is buzzing buzzing buzzing. It is working hard. "get that mouse in there"

200ml...

I would say that I'm sleepy, but obviously, I can blog, so not that sleepy. And super thirsty, which is strange given that I'm on saline.

I think I have about 20 minutes to go.

Very uneventful, other than the difficult needle, and the sleepiness. I may have to get a coffee to manage the drive home.

Medical assistants, not nurses.

Karen 1 and Karen 2 are not nurses... sorry for the error before. But they are experts...

But apparently, in Oregon, where we live, they can't do infusions unless a doctor is in the office too.

TIRED!

I can see why they give us napping chairs. I'm super tired...

The room is filling up - chatty relatives, a nice man sitting next to me reading. There are 5 of us getting treatment, including another first timer who is having back pain. They've been adding steroid to her saline bag, and watching her super closely. She seems ok now.

125 per hour

We're cranking now. but i'm typing with one hand to keep the machine from yelling

100 Ml per hour, and I'm feeling it

Ok, I'm definitely tired now. But blogging.

My spelling might get bad. be warned.

Conflict of interest

Ok, so the machine keeps beeping at me, it keeps getting mad.

Because my veins are so small, they had to put the needle in at the crook of my elbow. SO, now, when I bend my arm too much, it yells at me "downstream occlusion" and stops. They've moved it closer to me so I can run the machine myself. Kind ladies.

And they're heating up my gluten free quiche.

is it called "remicide?"

My brother just asked...

up to 80ml/hour...

15 minutes of this now...

Brad,Jennifer and Posh Spice...

A.K.A. ... what people who don't know each other, strapped to chairs, find to talk about.

These old ladies are pretty hip...

Next time I'm bringing a People Magazine...

from 40ml/hr to 60ml/hr

Ok, the machine just switched...upped the dose...

"get that mouse in there"

Comment from this woman across the way.

(remicade is made out of mouse protein, or some such)

Ok, just a few random items

They are playing the most annoying musak - fortunately very very quietly.

There is candy in the corner - with this metallic taste, one of those lollipops is looking really great right now.

MMM, strawberry.

There are very tempting junk fiction novels piled up in the corner - Jude Deveraux, here I come.

metallic

The oddest thing, too - when the saline went in I immediately tasted metal in my mouth.

Blood pressure time

116/72 - "very nice" Karen 2 says.

Disconcerting

Ok, all three times I've been in this infusion room, I'm the youngest one here. By about 20 years.

Drugs are in... feeling fine.

Ok, I'm officially drugged.

First off, I just found out that both nurses in here are Karens. Plus, my fab rheumatologist's assistant is called Caren. So... we've numbered them - actually, they've numbered themselves.

Karen 1 took out 30ccs of my saline, from the saline drip bag, and then put in the 30ccs of the Remicade into the drip. And now it's dripping. (if someone asked about my dose of Remicade, I'm getting 300mg, in "medicine talk" she she says).

Apparently the Remicade comes in tablet form, and because it's quite expensive they don't mix it until you're here, IV in arm, ready to roll.

The first nurse (Karen 2) had a hard time getting the IV in both my R and L arms - I have tiny veins, and she gave up after poking me a bunch. Karen 1 then took over - she got it in one jab, and in my left arm (I'm left handed). We like both the Karens, but Karen 1 gets the prize.

Once I was stuck, they mixed up the Remicade and got it going.

The drip is hooked up to a machine which measures the doses out in 8 different steps - slow at first (for about an hour) and then increasing 'til they're just blasting the stuff in me at the end.

So here we go.

Needle's in, waiting for the drugs

Ok, so I'm in a room, about 20x20, in a big comfy chair with my feet up. I think the flutters I'm feeling right now has to be nerves, because I've got no Remicade in me yet.

When you check in, they give you a form to fill out about whether or not you feel sick, you have a cold, cough, etc. No on all counts, for me, but the nurse just explained that they won't do the treatment if I'm sick, and I should call first if I feel bad.

There are 10 chairs in here...

OH< wait, here come the drugs. More in a minute.

I'm here

The WIFI is working.

Right arm about to be poked. Nice people.

Pre-Remicade jitters, seriously, now...

Ok, so I've had a rough few days, and as I mentioned yesterday, I haven't had a lot of time to do research on what it is actually like to get Remicade. So yesterday I turned to the Internet to find some answers, and completely freaked out.

Some people throw up, all during treatment.
Some people can't breathe.
Some people get terribly tired, and have to sleep for days.
One person I read about had to go to the E.R.

I didn't plan well. I'm home alone with my two kids this week - hubby is traveling again. What if any, or all of these things happen to me today? After all this reading, hyperventilation ensued, at about 4:30 yesterday afternoon.

So what did a brave girl like me do with all this terrifying information? I called fab rheumatologist's office immediately, and tried to talk them into cancelling my treatment.

They were very reassuring. They told me they have never had a huge problem in their office, that only a handful of their 400 patients have allergic reactions, and that at most I would just be sleepy, like I am when I'm having a flare. And that was unlikely.

But I should call someone, just in case, to make sure I have back up child care for the kids.

If it weren't for the fact that I'm going to Europe in 3 days (3 DAYS! WOW!) I would have canceled and waited til my hubby is home. But I want the treatment - my Humira is wearing off, and my knee is on FIRE every night.

So I'm going for it. I have two girlfriends on standby, and have an easy day tomorrow.

Stay posted. I have to go see Laser Lady in a few minutes (burn, baby, burn) and then I'm off to my infusion.

Pre-Remicade Jitters - what do I wear?

Ok, I kid you not, that was my big freak-out this morning. What do you wear to your first Remicade infusion? I know I want to be warm and comfortable, and they'll need easy access to my arms.

But I want to look cute, too. I might be 42, but I'm really 18 at heart.

I settled on Gap jeans, a white long sleeved shirt and a very comfy green sweater, with a blue scarf. Plus some gorgeous blue glass jewelry that sets off my eyes. Perfect.

And, of course, clean underwear. In case I pass out and have to go to the E.R. One always needs clean underwear in the E.R.

N=1 - Remicade (Infliximab) tomorrow

The last few weeks have been a bit bumpy - first my prednisone adventure, then a shot in the toe to fight the dactylitis. And then my grandmother died on Thursday, which drenched the little spark that keeps me writing with a vat of tears.

Suddenly it's Monday, and I'm starting Remicade tomorrow. I've been too caught up in everything else to think much about the comfy chairs, the free candy, and the two hour IV drip that Remicade infusions promise. But I guess I should get my head in the game.

I'm going on Remicade because my fab rheumatologist wants me to be doing better. We've decided that Humira is only taking me 75% of the way to "well". Our goal is 100%.

So what is Remicade? Here's a nice little blurb on Remicade and Psoriatic Arthritis from the Remicade website. Infliximab was developed at NYU School of Medicine, and is produced by Centocor, which is now owned by Johnson and Johnson. It is a TNF-Alpha blocker, like Humira. According to my doc, it has as good of a chance of working on my arthritis as Humira, but possibly will do better things for my skin. (Poor Laser Lady, we'll be putting her out of a job). Here's the blurb from Wikipedia on this drug.

So, here's the deal. Tomorrow, if the rheumatologist's office has their wifi up, I'm going to live-blog my Remicade infusion. Sure, it's not the State of the Union or the Blazers' game, but I think it will be fun. If you've been wondering what it's like to have Remicade, tune in at about noon PST. I'll write every 20 minutes or so, just to tell y'all what's happening in that room of big vinyl chairs. Does the needle hurt? Does it burn when it goes in? Did I get dizzy and pass out?

Way more fun than a Blazers' game.

If they don't have their wifi up, I'll blog it all in Word and transfer it over to Blogger when I get back home, so look for it by 5pm PST (children permitting).

Wish me luck. It can't be as bad as a death in the family, right?

Video on laser treatment, thoughts on words...

Here's a great little video from a local news station about excimer laser treatment... just in case you were interested in seeing what the treatment looks like. (BTW, I love that the ad they chose to show before the video is for a beach resort... in the video the patient complains that she was told to leave a beach because of her psoriasis!).

And, on that note... I'm getting really tired of how often the word "embarrassing" is used in conjunction with the word "psoriasis". True, it can be embarrassing, but is it THAT MUCH more embarrassing than other physically visible diseases out there? Do we say "the embarrassment of a broken arm?" or "the embarrassment of being a quadriplegic?". No! Why the lack of sensitivity for psoriasis?

Lets get rid of the word "heartbreak" too, while we're at it.

Anyway, just a quick morning thought. Laser lady had to cancel our appointment today - I'm having withdrawals... I was really enjoying working on my elbow tan.

Universities, beef, and some education on the side...

In the last few days two articles have come out in the New York Times that I think are relevant to this blog, despite the fact that neither of them is about psoriatic arthritis or psoriasis. Humor me... I do have a point...

The first is an opinion piece called End the University as We Know It, by Mark C. Taylor. It calls for a systemic reorganization of the university system, most specifically in graduate education, because:

Most graduate programs in American universities produce a product for which there is no market (candidates for teaching positions that do not exist) and develop skills for which there is diminishing demand (research in subfields within subfields and publication in journals read by no one other than a few like-minded colleagues), all at a rapidly rising cost (sometimes well over $100,000 in student loans).

Why is this relevant to PsA, you might ask? It was these paragraphs that hit me:

Responsible teaching and scholarship must become cross-disciplinary and cross-cultural.

Just a few weeks ago, I attended a meeting of political scientists who had gathered to discuss why international relations theory had never considered the role of religion in society. Given the state of the world today, this is a significant oversight. There can be no adequate understanding of the most important issues we face when disciplines are cloistered from one another and operate on their own premises.

It would be far more effective to bring together people working on questions of religion, politics, history, economics, anthropology, sociology, literature, art, religion and philosophy to engage in comparative analysis of common problems. As the curriculum is restructured, fields of inquiry and methods of investigation will be transformed.

Ok, so sub out the words "religion, politics, history, economics, anthropology, sociology" etc. etc. and put in "rheumatology, dermatology, immunology, gastroenterology" etc. etc. The more I learn about how deeply connected autoimmune diseases are, the more I wish that these, and other, fields of medicine were working more closely together.

Now I know I have it really good - my rheumatologist consults with my dermatologist on almost everything she does, and visa versa. But I'm assuming that that is not true for many of you, and certainly neither of them has talked to my gastroenterologist. I do like the idea of a new area of clinical (meaning, not in a lab- they see patients) specialization - autoimmunology - but boy folks in that field had better have great communication skills.

Anyway, go read the article. It really makes you think.

That second article? Here - Paying a Price for Loving Red Meat, written by Jane E. Brody. Apparently, a new study demonstrates that the more red meat consumed, the more likely you are to die early.

This article struck me because of the increased risk for heart disease that psoriasis patients (and, in theory, psoriatic arthritis patients) have. Here's my thinking - I'm already at increased risk for heart disease... and red meat consumption increases that risk further! I want to protect my body, and I want all of my readers to, too. So I thought I'd share this data...

For lunch today, I'll be eating lentils while reading the paper. What about you?

Psoriasis and Diabetes

By now, I'm sure most of you have heard about the recent study that demonstrated that women with psoriasis are more likely to develop diabetes and hypertension (high blood pressure). If you haven't, here's a good article describing the study, and here's the link to the abstract on PubMed.

In short, scientists found that women with psoriasis first were 63% more likely to develop diabetes, and 17% more likely to develop high blood pressure. We've known already that individuals with psoriasis are more likely to have diabetes, but this study demonstrated that women with psoriasis are more likely to develop diabetes after developing psoriasis.

Here's what's not known from this study:

• Will anti-inflammatory medication, used to treat psoriasis, be more likely to control diabetes too?
  
• Is the same finding true for men?
• How does this finding relate to recent research demonstrating that people with psoriasis are also more likely to develop cardiac issues?
• Are people with diabetes first more likely to develop psoriasis?
• Are diabetes and psoriasis all just part of a larger systemic inflammatory (autoimmune?) disease?
  

This study makes me think that dermatologists' jobs may have just gotten harder. It also makes me think about how little my primary care doctors know about the relationships between all of these diseases...

Golimumab gets the nod

Golimumab, (which will be called Simponi), another anti-TNF biologic drug (like Humira, Remicade and Embrel) has gotten FDA approval for use in psoriatic arthritis, rheumatoid arthritis, and ankylosing spondylitis. I wrote about this drug a few weeks ago - it's not a silver bullet, but provides another treatment option for those of us with autoimmune arthritis, and hey, any options are great.

What is cool about this drug is that it is a once a month injection, as opposed to Remicade's infusion every 6 weeks, or the every other week Humira. When I was first presented with the bouquet of biologic options by my rheumatologist and dermatologist, a lot of our decision making process in choosing a drug had to do with lifestyle and preferences. Humira you can manage at home, but you have to be a tough nut and able to give yourself a shot (I make my husband do it). Remicade means every 6 weeks you sit in a big comfy chair for 2 1/2 hours with an IV drip in the doctor's office - which means finding time in your schedule for this field trip. I do wonder if Simponi, which is just a shot every month, might be the easiest option - all things being equal.

It will be interesting to see how Simponi is marketed over the next year - Humira has been so present on the airwaves and in magazines lately... I wonder if Simponi will follow suit. Advertising is good - it increases awareness of these diseases in general.

On a personal note - I start Remicade next week. I hate infusions, which is why I chose Humira in the first place. But it will be a relief to get all the drugs out of my refrigerator - I don't need the reminder of my disease every time I reach for the milk - the pain in my hands as I grab the carton is enough.

Blogging on Prednisone

I'm a bit...

jumpy

today. Just

a little

bit.

I apologize to my regular readers for my scattershot thinking this week.

I'm on an 8 day short course of Prednisone, in order to try to tackle the inflammation in my toe, aka dactylitis. In a few weeks, I'm going to Germany to see my family, and I'd like to be able to walk up the four flights of stairs to their apartment without pain. So I'm trying to get a quick fix, using drugs.

Prednisone is a synthetic corticosteroid drug that can reduce inflammation and suppress the immune system. It was developed in the 50s, and is now available as generic. It's considered a very useful drug because it can frequently relieve pain and discomfort, control symptoms and/or treat many conditions - Crohn's, RA, organ transplant rejection, kidney disease, some headaches, and on and on.

It is also often used in psoriasis and psoriatic arthritis, for acute inflammatory situations, like mine.

Prednisone also can come with a lot of side effects, and needs to be used with care. Potential side effects include (but aren't limited to):

• Increased blood pressure
• Fluid retention, including swelling in your lower legs
• Mood swings
• High blood sugar, which can trigger or worsen diabetes
• Weight gain, with fat deposits in your abdomen, face and the back of your neck
• Increased risk of infections
• Loss of calcium from bones, which can lead to osteoporosis and fractures

(The above list is from the Mayo Clinic.)

All I know is that since I started my short course (which hasn't helped my toe, unfortunately) I'm unfocused, wound up, irritable, and very scattered. I'm finding it hard to write, to complete my thoughts on the page.

I feel a little crazy - I'm bouncing off the walls. But every time I hit a wall, my toe throbs.

So in this case, the side effects from the medication were more potent than the curative effects.

This prednisone trial makes me wonder, (in my newfound scattershot way), about moving beyond Western medicine (again) in order to tackle this disease. My body feels like a pharmaceutical playground these days - Humira, Remicade, Codeine, Diclofenac, Dovenex. I haven't done the extreme diet that some folks swear by in a while, although I did feel better on it when I tried it months ago. I've stopped going to acupuncture. I continually forget to take my vitamin D.

When my head settles down, I'm going to think more about the choices I've made for my body... prednisone was a good try, but not the right choice for right now. I do know its easier to take a pill in the morning than to manage a complicated diet - but that's just my laziness talking. And this pill, this time, didn't work.

Back to the drawing board...

The business behind the disease

Was I the only one who was surprised, when starting Humira, that you could get a payment plan to reduce the cost of co-pays to pretty much nothing for the first 6 months on the drug? It came in the form of a card, given to my rheumatologist to give to me, which I could then use with the pharmacy to get that co-pay covered by Abbott, who makes Humira. Was Abbott encouraging me through that plan to use their drug?

In the words of my favorite Alaskan Governor - "You betcha".

The business behind big-pharma and biotech is fascinating. As I noted in a recent post, we've come a long way in our genomic research, (which leads to the development of effective biologic drugs) but we still have a long way to go. It's easy to think about a set of good-willed researchers in their white coats worrying about our joints and striving for the good of science to cure us. I know many of these researchers (I'm married to someone who used to be one). I'm grateful to them.

It's also easy to forget that good science is also about good business.

Today, I found a European news article online that links to a report called: The Autoimmune Market Outlook to 2013: Competitive landscape, pipeline analysis and growth opportunities. I couldn't get access to the whole report, because it looks to cost a bundle. But here are some excerpts on the page describing the report:

-The global autoimmune market generated sales of $31.9bn in 2007, an increase of 14.4% over 2006 sales. The market is forecast to grow at a CAGR of 8.1% to reach a total value of $51.0bn in 2013.
-Immunosuppressant drugs dominate the automimnune [sic] market, with four products from this class accounting for 40.3% of total market sales. The highest selling immunosuppressant drug was J&J/Schering-Plough's Remicade, with 42.1% of total sales in this class.

and:

Use this report to:

- Assess patient potential, treatment trends and sales patterns of major autoimmune indications over the period 2009-13, with this report's coverage of osteoarthritis, rheumatoid arthritis, crohn's disease, systemic lupus erythematosus, ulcerative colitis and multiple sclerosis markets across Japan, France, Germany, Italy, Spain, the UK and the US.
- Discover the market dynamics of the autoimmune area and understand the impact of recent events by assessing key market trends, growth drivers and the latest issues affecting product development.

I'm glad there are market analyses being done regarding both autoimmune diseases and the drugs that treat them. And, of course, I worry whenever big money is involved, esp given our economic climate. Mostly, though, it is important for those of us who are health consumers to understand the multiple motivations behind good science. Money talks.

A new twist on the doctor/patient relationship

Imagine what it would be like if your doctor really knew what you were thinking. Imagine if, almost daily, she knew how you were doing: which days were bad and which were good, when your joints were hurting like fire and when you felt like a million bucks.

I got another "call" from my rheumatologist last week... and as it turns out, she knows things I haven't told her. She knows when I'm hurting, and when I'm exhausted. She knows that the dactylitis in my toe is killing me, and that last month I was so wiped out from a flare that I lost my creative fire. And she's concerned, because she thinks I should be doing better with my psoriatic arthritis.

The crazy thing is, until she called, I thought she thought I was doing just fine.

During the past 2 weeks, we both realized that the person she sees in her office for 15 minutes every 2 months is different from the person I am during the rest of my life. What changed?

She started reading my blog. Faithfully.

(An aside: Hi Dr. _____, I hope you're having a good day! See you for my infusion next month!).

It was a revelation to us that we had so deeply miscommunicated about what our goals were for my health. As a consequence, we have both done some thinking and talking about how we view each other, as "patient" and "doctor", and how we view other "patients" and "doctors" in our lives.

I don't think I gloss things over with my doctors. I tell the truth about where my pain is, and how bad. And she doesn't think she glosses over things in her visits (and as you all know, I think she walks on water).

But somehow, during the our conversations, we miscommuncated about what we were shooting for. She talks about "remission" - and to her that means symptom-free, a normal life. To me "remission" means better. She talks about "better" and thinks symptom-free, normal life. To me "better" means I can get down the stairs a bit faster than this summer.

I've become so accustomed to pain that I realize that I don't think about the little things anymore. I don't sweat the small stuff. I've become numb to the days when my hands are so stiff I can't type for an hour in the morning, or my hips ache when I bend down to pick up a Lego. At least I can ride my bike, right? So to me I'm "better".

But to her, I'm not.

She told me she has gotten sad thinking about her other patients that she doesn't really know as well as she's gotten to know me, because of my writing, and that she can't help as well as she's trying to help me. She told me she's been thinking hard about how she practices medicine.

I'll save our new treatment plan for another blog post (My hands aren't working so well today, Dr. _____).

But before I stop, I just want to say to all of you patients and physicians out there: sweat the small stuff. Don't give up on getting to "better", and even more important, make sure you both agree on what "better" looks like. Make sure you both have the same goal. Talk.

And write your own blog. It works.

Laser Lady is a mean lady

I had my 3rd excimer laser treatment on Tuesday, and WOW, pain. I blistered and it hurt.

I also learned that Laser-lady hasn't been 100% honest - I think she was trying to shelter me. It turns out that when she's adjusting the laser to the right level for your skin, the goal is not to avoid blistering. The goal is to get you to a level of laser intensity so that you hurt for 24 to 36 hours afterwards. If you hurt for less than 24 hours, it's not intense enough. If you hurt for more than 36 hours, its too much. Unfortunately, to find this sweet spot you are pretty much trying to get to blister level, because that's how you know when to scale back!

After Tuesday's treatment, I hurt for more than 48 hours. I hurt 'til I walked into my appointment on Friday. I blistered, I scabbed, I bled. It was a freakshow on my elbows.

And Laser-lady was pleased!

(Sorry, Laser-lady, if you're reading this. You and your little laser gun rock. I know you're doing it for my own good).

But OUUUCCCCHHHHH!!!!!!!!!

Make 'em laugh, doc!

We all know psoriatic arthritis is no laughing matter, but it appears that if we can find the funny side of our disease, we'll do better.

The Bio-Medicine website has a great article today about a research study showing that laughter can affect your disease course. Researchers took a group of diabetics, put them all on the same medication, but made only half of the diabetics watch a humorous video (of their choice) for a half an hour each day. The other half were not prescribed humor.

The folks who watched the funny videos:

had lower epinephrine and norepinephrine levels by the second month, suggesting lower stress levels. They had increased HDL (good) cholesterol. The laughter group also had lower levels of TNF-α, IFN-γ, IL-6 and hs-CRP levels, indicating lower levels of inflammation.

Crazy cool - laughter may reduce inflammation. Now I have to figure out what TV show makes me laugh for 30 minutes straight... finding one may be harder than giving myself that methotrexate shot!

Genomic research update - we've got a ways to go.

The New England Journal of Medicine published several articles this week about the current state of research on the human genome. The articles were especially focused on whether greater understanding of the genome will lead to greater understanding of how humans develop certain diseases.

(If you, like me, need to run to the dictionary every time you hear the word "genome" to find out why it is different from "gene" or "chromosome" - here's a good link. In short - the genome is the complete set of genes in a particular organism).

Kraft and Hunter, in an article they title "Genetic Risk Prediction: Are we there yet?", state pessimistically:

We are still too early in the cycle of discovery for most tests that are based on newly discovered associations to provide stable estimates of genetic risk for many diseases. Although the major findings are highly unlikely to be false positives, the identified variants do not contribute more than a small fraction of the inherited predisposition. ...Estimates are poor predictors of risk, both in absolute terms and in relation to risk estimators that will be available when more of the remaining locus associations are discovered.

In other words, to answer their title question - no, we're not there yet. The New York Times has a great review today about the NEJM series of articles that explains this far better than I can. But, basically - researchers and drug companies thought that if we could examine the genomes of people with illnesses and compare them with genomes of people who are well, one or two genes in the genome would essentially "light up" as the key genes causing these diseases. Drugs could then be made that would alter these genetic sequences, thus curing those diseases.

Turns out we're more complicated than that - much more complicated. When one or a few genes are implicated in a disease, usually these genes can only predict the disease some of the time, for some people. There seems to be a lot more going on in our bodies besides genes in the development of a disease. AND, often, there are hundreds, instead of tens, of genes involved in a disease, which makes the development of a targeted drug really difficult.

It's very smart for these scientists to be taking a step back to think about whether or not the genomic research they are doing is going to pay off in the short run (or long run). If you look at the NEJM articles, you can see some differing of opinions - some folks sound more optimistic than others... some are wisely watching their wallets, and some are ambitiously still looking into the future.

I fear we have a long way to go.

Celiac Disease and Psoriatic Arthritis

I was trolling around PubMed today and came across this topic... frankly, I'm surprised at myself for not looking at it before, considering my history.

A study was published in the Journal Rheumatology in 2002 linking psoriatic arthritis to celiac disease. The researchers found that there was a higher rate of celiac disease in their PsA patients. They state:

An increased prevalence of coeliac disease in patients with PsoA has not been reported previously. Among our patients, 4.4% had coeliac disease (ascertained by the presence of villous atrophy) compared with 0.4% in a large Swedish adult population of blood donors.

also:

Patients with PsoA have an increased prevalence of raised serum IgA AGA and of coeliac disease. Patients with raised IgA AGA seem to have more pronounced inflammation than those with a low IgA AGA concentration.

Celiac Disease (or coeliac disease, if you live in Europe), is an autoimmune disease in which the body confuses gluten (a protein found in wheat, barley and rye, as well as some other grains) with toxins. If a "celiac" ingests gluten, the body produces antibodies to break down the intestinal wall, destroying the villi which are used to digest food, in a flawed effort to save itself from toxins. When you lose those villi, you get super sick - anemic, weak, skinny. The only known treatment is complete adherence to a gluten free diet.

What this study is saying is that people with psoriatic arthritis are more likely to have celiac disease, and that patients with more acute inflammation in their psoriatic arthritis could possible also have worse celiac disease.

I have had celiac disease and have been on a gluten-free diet for 16 years. I continually struggle with the autoimmune diet (no dairy, alcohol, sugar, etc - boring!) but the gluten-free part of the autoimmune diet has been easy. Gluten makes me very, very ill, and I'm never tempted to cheat. Its not worth it. When we're better friends I'll describe what happens to my gut when I eat wheat. But not yet. I don't know you well enough.

The researchers state, at the end of their article:

Studies of the gastrointestinal mucosa in PsoA patients are therefore needed. Controlled studies of the effects of a gluten-free diet on the severity of PsoA are also required.

In short, more psoriatic arthritics should go on gluten-free diets to see if they get better. In a research setting, with control subjects eating gluten, etc. etc.

Of course, the plot thickens. Here in the U.S.A, another study was conducted which looked at the prevalence of IgA antibodies to gliadin (in other words, celiac disease) in folks with psoriasis and psoriatic arthritis. Their results found no increase in these antibodies in psoriasis and psoriatic arthritis patients. They state:

We found no support for the results of prior studies showing that elevated AGAs occur with increased frequency in patients with psoriasis.

I'm not convinced. Look at this abstract if you want to have your mind blown. It lists many, many skin manifestations in auto-immune diseases - from Grave's to Crohn's to celiac disease. It is apparent our skin, as one of the organs of our bodies, is greatly affected by our immune system, especially when it is in havoc. I'm continually astounded by the links between all of these autoimmune diseases, and by how so much of this science is still in its infancy. And it appears that our skin disease, and our joint disease, may be related to a gut disease.

Hm. I meant for this to be a short blog post. But isn't this stuff fascinating? And here's another piece in my puzzle:

I have no idea if a gluten-free diet would work on my PsA, because guess what... the year I developed celiac disease was the year my knees first showed signs of arthritis. Autoimmune diseases can be triggered by something in the environment, and in 2003 I had just come back from Tonga with a bad case of giardia, a parasite. We think it triggered the celiac disease, and I know now what I didn't realize then - I was developing two diseases back in 2003 instead of one. At the time I had some physical therapy, but ended up ignoring my knees in order to focus on my gut. After a while, the knee pain was pretty manageable.

So here's my question: Did the giardia trigger two diseases, and did the new gluten free diet slow the disease process in my knees?

A final note: I've not had a single bout of ... um... unmentionable gastrointestinal troubles ... since I went on Humira for my arthritis. Go figure.