Tuesday, January 12, 2010

Chicken Collagen and RA

By now, many of you will have heard that a study came out of China at the end of 2009 demonstrating that taking chicken collagen (I assume in capsule form) reduced the symptoms of Rheumatoid Arthritis. Here's an article describing this finding in lay-person's terms. According to this article, the principal investigator of the study suggests that the chicken collagen makes the body more tolerant of cartilage, which the immune system may be mistakenly attacking in the case of RA. If this is so, I wonder if taking the collagen longer would increase the effects. Right now it is not as effective as methotrexate, but it's close, and there are far fewer side effects. I sure hope they're doing long term studies.

On the other hand, a blog post from Dr. Borigini (from HealthCentral) from about a year ago, suggests (at least to me) that use of collagen over time might decrease effects. He says:
The collagen angle remains an interesting one, as rheumatoid arthritis involves inflammation of the lining of the joints as a result, perhaps, of the body reacting to itself -- in the case of rheumatoid arthritis, attacking the lining of the individual's own joints. Because type II collagen is a major protein in joint cartilage, it could be a "target" for a person's own immune system to mistakenly attack.
If this is true - if the collagen is providing a "decoy" - I would assume that this treatment would provide less and less help with RA over time, as the body figures out that this is a decoy and goes back to fighting the real McCoy.

Either way, as I said before, long term studies will be helpful. One could argue that because it's not quite as effective as methotrexate, people should just stay on their meds and wait for more studies to come out. But I think I'm going to run out and get me a bottle of chicken collagen capsules, and take them along with the methotrexate that I'm starting tomorrow.

I'll do anything to get a little more relief. Pain is bad.

Thursday, December 10, 2009

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.

Thursday, November 5, 2009

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.

Thursday, October 29, 2009

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?

Sunday, October 11, 2009

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!

Tuesday, October 6, 2009

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?

Friday, September 11, 2009

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.

Thursday, September 10, 2009

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.

Tuesday, August 4, 2009

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.

Monday, July 27, 2009

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.

Thursday, July 16, 2009

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).

Tuesday, July 14, 2009

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.

Friday, July 3, 2009

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.

Thursday, June 25, 2009

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.

Tuesday, June 23, 2009

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.

Wednesday, June 17, 2009

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.

Monday, June 8, 2009

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!

Saturday, June 6, 2009

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.

Friday, May 29, 2009

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.