A great article about odds and illness

I just read this wonderful essay in the NYT by a regular guy - a guy who is at the same time a husband and a doctor - watching his wife having a chemo infusion for the first time. The article centers on the risks involved in chemo infusions of Taxol, a drug used to treat breast cancer, and the rare but potentially fatal allergic reactions to the drug.

I liked this article for two reasons. First, I think it addresses the fear that any of us who take Remicade, or any other strong and dangerous drug, experience. Infusion reactions are lurking possibilities that could occur at any time. The reaction to Taxol can be far more serious than those for Remicade, but the fear he and his wife experience echo my own.

Second, the addresses something that all of us with unusual illnesses struggle with. Odds.

The author, Dr. Peter Bach, writes about the risks and odds he has encountered with his wife during her fight with cancer:

Each time we heard “that rarely happens,” we knew that whatever it was – fevers requiring hospital admission, mouth ulcers that would stop you from eating, overpowering fatigue, hair coming back a different color – it could actually happen. Each time the odds were in our favor, but the odds on the other side were not zero.

Our disease, Psoriatic Arthritis, is not common - roughly only one in 200 Americans have it. Put one way, you could say we beat the odds when we got our diagnoses. But instead of making us feel lucky, I suspect beating the odds makes most of us feel more vulnerable. As someone with multiple diagnoses, I take each new ache or odd sensation a little more seriously - because I never know when I'll beat the odds yet again.

Dr. Bach puts it nicely.

The odds that Ruth would get breast cancer before she reached age 43 were about 100 to 1. Odds seem a lot different once you’ve come up on the short end.

Chances are I couldn't say it better - so I won't even try.

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.

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!

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.

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.

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...

And it burns, burns, burns... the ring of fire

I had my first laser treatment on Tuesday, and I wanted to share the experience here in the blog, in case anyone is considering trying it.

Excimer laser treatment for psoriasis is used primarily for people with stubborn but smaller and contained plaque areas. The laser's highly concentrated UVB light treatments have been proven more effective than other treatments for many folks, and can put psoriasis into remission for several months. About.com has a nice description of the treatment here.

I have plaque psoriasis on my scalp and on my elbows, and the Humira and topical ointments have not reduced these patches, so my dermatologist and I decided to give the laser a go.

First - getting on the calendar. The scheduler went ahead and scheduled all 10 of my appointments up front. Geez... scheduling those appointments took longer than the first laser treatment. I'm still not sure what was so challenging, but it took that patient woman about 20 minutes, 3 phone calls and a supervisor coming in to help to get me on the books. I'm going to be seen at 11am every Tuesday and Friday through the first week of May.

On Tuesday, I showed up about 5 minutes early, and was seen right on time by the physician assistant, who will be my laser-lady for every visit. We had a brief conversation about what to expect from the treatment and where I wanted to be lasered, and then she had me sign a consent form. This took about 7 minutes.

Laser-lady then asked me about how easily I sunburn, and adjusted the laser accordingly. Apparently, treatment is started at the lowest level, and then is gradually increased over time until it becomes too intolerable. As I mentioned in an earlier post, the hope is to avoid blistering (even though it puts you in remission sooner).

The laser itself is at the end of a wand, about the same diameter as a half dollar. We both put on safety glasses, and the treatment began. Laser-lady placed the wand over each area we wanted to treat, and pressed a button. The wand glowed blue for about 1 second, and then beeped and changed color to red when the laser shut off. Because the patch on my right elbow is bigger than the wand, she moved it several times, each time pushing the button to activate it.

Then we moved on to my scalp, and behind my ears.

The sensation is warmth, at least with these first treatments. Towards the end of each second, just before the beep, you can feel a bit of heat. But not much. I expect that as we increase each treatment, the heat will increase and it will get more and more unpleasant. But this was not unpleasant at all.

The entire treatment took about 5 minutes. Really. Took me 4 times as long just to drive to the office.

For the first day after the treatment, my scalp felt a little warm, but not very. My elbow is bright red now, not covered in whitish plaques, and feels a little raw. But other than that, I feel nothing.

My next treatment is tomorrow. So far, so good.

Burn, baby, burn

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

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