up to 80ml/hour...

15 minutes of this now...

Brad,Jennifer and Posh Spice...

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

These old ladies are pretty hip...

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

from 40ml/hr to 60ml/hr

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

"get that mouse in there"

Comment from this woman across the way.

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

Ok, just a few random items

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

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

MMM, strawberry.

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

metallic

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

Blood pressure time

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

Disconcerting

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

Drugs are in... feeling fine.

Ok, I'm officially drugged.

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

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

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

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

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

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

So here we go.

Needle's in, waiting for the drugs

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

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

There are 10 chairs in here...

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

I'm here

The WIFI is working.

Right arm about to be poked. Nice people.

Pre-Remicade jitters, seriously, now...

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

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

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

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

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

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

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

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

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

Pre-Remicade Jitters - what do I wear?

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

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

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

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

N=1 - Remicade (Infliximab) tomorrow

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

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

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

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

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

Way more fun than a Blazers' game.

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

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

Video on laser treatment, thoughts on words...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Psoriasis and Diabetes

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

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

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

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

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

Golimumab gets the nod

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

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

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

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

Blogging on Prednisone

I'm a bit...

jumpy

today. Just

a little

bit.

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

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

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

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

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

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

(The above list is from the Mayo Clinic.)

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

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

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

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

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

Back to the drawing board...

The business behind the disease

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

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

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

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

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

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

and:

Use this report to:

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

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

A new twist on the doctor/patient relationship

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

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

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

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

She started reading my blog. Faithfully.

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

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

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

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

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

But to her, I'm not.

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

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

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

And write your own blog. It works.