Beauty... skin deep... etc etc

Just a quick post to say: hurrah for Sandra Dubose-Gibson - a gorgeous, bald, autoimmune beauty queen. Here's a quick story about her - I felt the need to share this story; it made me smile and I hope it does the same for you. Lets all go out there and bare our elbows and knees and bald heads and show our inner and outer beauty.

BTW - Does anyone know of a beauty queen with psoriatic arthritis? (Besides Jon Lovitz, that is?)

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.

Selling the Ferrari

Infusion reactions are super fun, high speed adventures. Wheee!

Imagine this. You hop into your cushy Remicade lounge chair, get strapped up to the drippy machine and get on with your morning - checking email, snacking on a tootsie-pop and waiting for that mousie to make you feel better. (At least that's how my infusions start - don't yours?)

Then, out of the blue your face turns red, and your stomach starts to feel green (no pun intended). The room starts to look like it's been designed by Dr. Seuss and then - best of all - Horton comes and sits his big elephant butt down on your lungs. (At least that's how my infusion reactions start - don't yours?) In short, you can't breathe.

The Remicade team I know and love is fabulous - I have never seen two nurses move as fast as mine did that day when I waved and hooted and tried to scare the Grinch away. They shut my IV off, doped me up with Claritin, added a saline bag and hovered. And we waited.

This was last December. Like most reactions, mine went away within a few minutes, leaving me breathless and insecure.

I've come to rely on Remicade to work it's magic on my Psoriatic Arthritis. 2.5 hours in a chair with a movie, and I felt like gold for 5 weeks. My denial about the power of this drug has gone hand in hand with my denial about being sick at all. Fab Rheumy has been telling me not to play with fire - that I need to take this drug seriously. But I felt too good to be serious. Lalala and all that.

Apparently in clinical trials, 20% of people had an infusion reaction to Remicade, as opposed to 10% with a placebo. I could not find the study backing this data up - but the link made me sit up in my chair. Nearly as scary - a recent single center study of people on Remicade (for Crohn's) showed that 15% had serious infusion "events". That's a good enough number for me.

(an aside - I like the word "event". I certainly had the attention of the entire Remicade room for a morning - I felt like a bride).

I successfully had my infusion, and had one more infusion in January that went swimmingly. But it's hard to sit there to get doped up in order to trick your body into accepting a high powered drug. Every time I've thought about what I was doing to myself, it just felt... bad. My body is saying no for a reason, right? Why did I keep trying to force the stuff in? I guess because I like feeling better.

Long story short - a few weeks ago I got a visit from that damned blue elephant again, and we had to shut 'er down. And now I'm off Remicade.

(By now I know many of you don't care about my reactions - all you want to know about is my super duper Italian car! Ok. I'll tell you about it.)

Right about the time my doctor and I decided to take me off of Remicade, I saw this article. In it, Dr. Francisco Kerdel (a dermatologist from the University of Miami) is quoted as saying that inflixumab is a Ferrari. He warns other physicians:

"This is a high-performance vehicle, but you need to know what you’re doing... keep safety in mind from the start."

Then, Dr. Kerdel dragged me down to the used car lot, and showed me a car I might like better. Enbrel, the station wagon of biologics.

"Etanercept is like a Volvo. It’s not a fast car, it’s not a flashy car, but it’s a good, solid car that will probably work for you."

This metaphor, goofy as it is, was another reminder to me that I can take none of these drugs for granted. None of us can. Who ever thought putting boiled up mousie bits into our bodies was smart? It works... a lot of the time. And that is glorious. But what else can and does it do? I don't think anyone knows.

Sometimes I think I see Horton, off in the distance, driving his Ferrari into the sunset. I kind of want him to come back. I'm anxious about starting a new drug, especially after my experiences with Leflunomide and Remicade. Better the devil you know - right? Or no devil at all. But I can't imagine life without a biologic.

A sad state of affairs. Sounds like time for a new car. I guess this time it's a Volvo.

Lalalalalalalala I’m not listening!!!!!!!! (or, why I stopped writing for a long ol’ while…).

My mother-in-law is one of those people. You know – the ones who will give away the end of a movie. From out of the blue she hits you with it - we’ll be talking about groceries, or a new pair of socks, and she’ll blurt out, “oh, and the Sixth Sense? Did you see it? Bruce Willis is actually dead!”

Thus, I spend a great deal of my time with my in laws with my hands over my ears, chanting “Lalalalala” at the top of my lungs, trying not to hear about James Franco’s arm, or whether Annette and Julianne get back together. Childish, yes, but effective.

This immature avoidance strategy of mine has rubbed off on the rest of my life. If I just ignore things, they’ll go away, right? If I don’t know about what happens in the end, then the end might not happen, right?

That’s what I think happened with my blog.

I think it all started when I kept finding articles about how people with psoriasis and psoriatic arthritis are more likely to have heart attacks.

Coupled with similar research about other co-morbidities – it seems we’re at risk for tons of awful stuff – it was all I could do to even turn on my computer. If I don’t read it, it’s not true, right? And if I don’t write about it, it’s really not true. Right? Right?

Also, gladly, I started feeling a lot better last year, especially last summer. Riding my bike, goofing with my kids, going on business trips. Sure, I had to go get an infusion every 5 weeks, and take a fistful of drugs every morning, but who cares? I have been deep in my fantasyland of “normal”. And writing about my disease makes it harder to live in fantasyland.

Lalalalala. I can’t hear you. Sometimes, it’s a lot easier to pretend to not be sick.

Two things have happened in the few months, however, that have made me miss writing, researching, and connecting the psoriatic arthritis dots.

First, I’m sick again. More than just a little sick - I’m bunches sick. My platelets are acting erratic… probably from the leflunomide I went on 6 months ago. My hands and feet are perpetually tingly and numb. I’m tired all the time (it’s taken me three days to write this blog post). I’m discouraged, and I hurt. I had a terrible flare this last month – I woke up for 10 days in tears because of the needles some hobgoblin decided to stick into most of my joints. And now I’m on prednisone and I’ve turned into a domestic terrorist. I’m doubting my medical care, I’m doubting myself – even worse, I’m doubting the future.

I’m just too tired to stick my fingers in my ears anymore, it turns out. I have no energy to holler.

But the second thing that happened was a gift. In the middle of all this pain and hurt, I got an email from a new reader. I thought nobody read this blog anymore, and then this lovely person wrote me an email, telling me how much he appreciated my writing – that he knew how I felt. He reminded me that I wasn’t alone.

To you, reader dude, I say thank you – I know you didn’t mean to, but you reached down a hand and pulled me out a pit. You were my blog's phoenix capsule.

When you cover your ears and yell really loud, you miss stuff, it turns out. You miss the positive research findings (more on that later). You miss the comrades in arms. You actually miss the hope.

Recently, I've really missed the hope.

So I’m trying to write again. I might succeed, I might not. But I’m gonna try. Wish me luck.

But please, somebody, warn me if my mother in law is coming for a visit. I haven't seen "The Fighter" yet.

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.

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.