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.

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.

N=1 - What I learned in Germany

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

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

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

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

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

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

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

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

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

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

Tscheuss!

N=1 - Remicade (Infliximab) tomorrow

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

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

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

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

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

Way more fun than a Blazers' game.

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

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

N=1 - I bought a bike

I bought a bike. And I'm riding it.

Those are revolutionary words for me.

I have always been unathletic, physically weak, and combative when told to exercise. "I can't, I have sciatica". "I can't, I have bad knees". "I can't, I'm working on my dissertation".

Excuses to avoid physical activity fall easily from my tongue, and as long as I stay slender, I use those same excuses on the critics inside my head. I live in a cerebral fantasy world in which if I'm smart, productive and thin, I don't need to exercise my body. I'll admit it, I'm lazy.

The psoriatic arthritis diagnosis reconfirmed my beliefs about my history of inactivity. "Hey," I told myself, "I'm different from other people, I have this disease, and always have. Of course I'm always weak, and tired, and fragile. Heck, I injured myself while sailing! Who develops chronic back problems from SAILING, for Pete's sake?"

Must have been early PsA, I've been telling myself. These kind of experiences have taught me to believe that I'm much better off behind a desk where I won't embarrass or hurt myself.

Until... a few weeks ago, someone on the psoriatic arthritis message boards who sounds like he is in a lot of pain wrote that he still goes for his run every day. This simple post blew my mind. Many days just getting down the stairs to the kitchen is intimidating. What, is he nuts? His passing comment about his run became a direct challenge to my laziness.

A day later, an article written by a doctor declared that gentle exercise helps arthritis. "Swim, or walk, or bike" it said. Another challenge to my long held beliefs.

By the way, today is the last day of my blogging challenge. I never thought I could write something every day - that I could keep this up, this crazy blog, and find the courage to put my writing out there so publicly. But I have.

And I'm sad. Sad that the my blog campaign is over. I love a challenge. I love a good dare.

So I bought a bike. It's a green Trek townie - a new friend called it elegant, and a long-time friend told me I look like Pee-Wee Herman on it. It makes me sit super upright, to not hurt my back, and I bought a pink helmet with stars to go with it, just for kicks.

PeeWee, eat your heart out.

I ride, and ride, and ride. It makes me happy. I rode 4 miles one day last week without pain. Biking with arthritis makes my body feel the way it did swimming while pregnant. Weightless, strong, and normal.

My new challenge is to ride my bike 3 times a week. For two months. At least 2 miles. And I won't ask any of you to sponsor me ... I promise.

Ready... set... GO!

you are what you eat

I'm just starting to do some reading on how anti-inflammatory diets affect inflammatory arthritis, after toying around with one of these diets for the last few months. This article from CBS presents a decent review of this diet, but also implies that as of yet most evidence of effectiveness of the diet is either anecdotal or inconclusive.

However, here's a fairly recent article which suggests that there are significant benefits to eating a gluten free, vegan diet if you have rheumatoid arthritis. The GF vegan diet is by it's nature anti-inflammatory. While we can't assume what works for RA will work for PsA, I think it can't hurt to surmise some connection between the two, because they are both types of autoimmune arthritis and they have such similar symptomology. Hey, inflammatory arthritis is inflammatory arthritis!

Myself, I'm avoiding gluten (because I'm a celiac), sugar, dairy and alcohol. I'm also trying to reduce nightshades. Anecdotally (N=1) I've found that I do feel worse on the day after I've had a sugar/dairy binge. I haven't had gluten in 15 years (on purpose at least) so I have no personal data there.

N=1 - Humira take 2

Went to see my wonderful rheumatologist today. I really am beginning to think this woman walks on water. Of course, it doesn't take much for a doc to get my gratitude - just the basics. It's as simple as: Listen. Take me seriously. Don't hurt me. Don't make me wait for an hour to see you for 5 minutes.

Anyway, I've been on Humira now for 14 weeks. As I mentioned in an earlier post, my rheumatologist had great hopes that Humira would make me able to do "whatever I wanted to do, whenever I wanted to". Well.... 14 weeks later, and I'm estimating I'm only about 50% there. My knees and thumb are much better, and I'm not so stiff in the morning. The depression is abating (thanks Julie). But my hips are much worse and my hands feel like flippers. Even more discouraging, the fatigue is back - I wanted to sleep for most of January. And, the psoriasis is not better, and in fact may be worse.

Feeling good for a couple of months (in my case, Nov and part of December) but then sinking back into a deep flare (January) is not where my doc wants me to be.

So we are at a decision point. Our choices are:

1) stay on Humira every other week, and see how I do in 6 weeks with an additional anti-inflammatory drug (in this case Diclofenac).
2) go to Humira every week. This means my husband gets to stick me with a needle every week instead of every other week. (Thanks Jordan).
3) switch to Remicade - get an infusion every 6 weeks, at a hospital. Much less freedom.

(By the way, for all of you alternative folks - I am also on an anti-inflammatory diet, do yoga, and exercise the best I can, as well as seeing an acupuncturist).

We chose 1, for now. I'm going to consult with my other great doc - my dermatologist - before making a move to up the Humira or switch to Remicade. And I'm going to keep pacing myself. I can't do too much, I can't do too little. It's a fine balance.

N=1: Introduction

Today I decided that while the focus of this blog will be PsA research and information, I'm also going to continue to give personal health updates here. I'm doing this for two reasons. One - I think I'm a fairly typical PsA sufferer. Maybe some of the lessons I'm learning through my disease course can help others.

Two, I like to bitch. When you hurt every minute of every day, it feels good to complain about it. If I do it here, I may be able to give my poor husband a break!

However, I recognize that not all of you are interested in all this personal stuff. Therefore, I've decided that whenever I make an entry that is about my healing process, I'll title it N=1. In other words - I'm just writing about me. This is not a study, or a great article, or a connection I've made. It's just: how am I doing, what's changing in my disease and treatment, what hurts today and what am I gonna do about it.

Feel free to read or avoid N=1. I'll try not to get too graphic, but I can't make any promises