drug confusion

New York Times story Vioxx. Celebrex. Now Aleve. What's a Patient to Think?

Spondylitic and down on his luck

For its fundraising campaign for its Good Neighbours Fund, the Roanoke Times profiles Ricky Stallings, a 44-year-old man with ankylosing spondylitis whose life story is the ne plus ultra of worst-case scenarios: he had to stop working, got divorced and ended up homeless, on disability and unable to give music lessons because he pawned all his instruments. I'm uncomfortable with uplifting stories about the disabled because I think it's inappropriate to draw inspiration from other people's suffering. This story doesn't even qualify as uplifting. Granted, it's meant to be a case study for a good cause, but my first reaction was to take offense. Now that I've thought about it, though, I may have been offended by Mr. Stallings's condition, not necessarily how he was portrayed: I'm angry that this happened to him. And, at the same time, it hits too close to home for me: "there but for the grace of God" and all that. It scared me, pure and simple.

More Remicade news

On the one hand, the FDA has approved Remicade for the treatment of ankylosing spondylitis. (The EU had already done so.) But on the other hand, the FDA and the drug manufacturer also warned that Remicade has been linked to rare and occasionally deadly liver reactions. (See previous entry.)

From my cold, dead hands

Arthritis drugs have really hit a rough patch lately, haven't they? First, of course, there was the Vioxx recall, about which much has already been said.

Then, when Health Canada issued a warning about Bextra (valdecoxib), another cox-2, I thought, hmm, that's peculiar. And when, as Richard pointed out, Celebrex was linked to increased heart risks, I thought that we may well be seeing the beginnings of a wholesale collapse of cox-2 drugs as a class. (See also today's recommendation from the FDA to limit the use of Celebrex and Bextra.)

But then they went after my beloved naproxen, which, in patients over 70, has shown an increased risk of heart attacks. And I thought, oh no you don't!

According to the CBC News Online article,

The FDA advised patients currently taking naproxen to follow the instructions on the label and not to exceed the recommended dose or take the medication for longer than 10 days unless directed by a physician.

With the exception of a period between June 2000 and January 2001, when I experimented with other arthritis drugs, I've been on high doses of naproxen for seven straight years. Oh dear.

When I met other AS patients at a day-long class on managing the disease, we compared notes on what we were taking. I was on naproxen. The woman next to me couldn't handle naproxen and was on indomethacin (which, I later discovered, I couldn't handle). Guy across the room took ibuprofen every once in a while. My point: every one of us has a different case that reacts differently to medication, and each of our bodies tolerates different drugs in different ways. So I suspect that when we find a drug that works, we tend to want to hang onto it. For Richard it's Celebrex; for me it's naproxen; our other still-to-post contributors are, I believe, taking other medications. Chacun à son besoin.

Here's a story about a 37-year-old AS sufferer for whom Celebrex is the best option. She will not stop taking it unless Pfizer pulls it from the market. If she can't take it, she doesn't think she can work.

Fortunately, no one is talking about withdrawing naproxen or Celebrex quite yet. No medication is without risks. There ain't no such thing as a free lunch. And frankly, most of us will take that risk rather than face certain, constant debilitating pain.

Celebrex of death

So the news is all abuzz that 400mg of Celebrex daily maybe increases your chance of heart attack.

And maybe not.

Since I take 400mg of Celebrex daily, I suppose I should be concerned, but I figure,
I'd rather be in minimal pain and then have a heart attack,
than suffer in pain and live a long time.

Here is a link from Google News Canada that is current reporting approx 1,230 stories on this topic.

Remicade (infliximab) and ankylosing spondylitis

One of the new biologics, infliximab (brand name: Remicade), is being used to treat ankylosing spondylitis, apparently with success.

Chris Steel writes, "I have AS and am on the Remicade and so is my girlfriend. It is working well for us but apparently it may stop working after a certain amount of time."

One of the drawbacks of infliximab is that, like other biologics, it's freakin' expensive. You really need a drug plan. But a German study argues that it's actually a cost effective treatment: a group of 49 patients who took infliximab were hospitalized less often and had fewer days off work than they did in the year before treatment.

The funny name

Possibly the most frustrating thing about having ankylosing spondylitis is dealing with the fact that hardly anyone has heard of the disease, unless they have a medical background or know someone else who has it. This means extra work on our part: whenever we have to tell people that we have AS, we also have to explain what AS is. And we have to be careful about it. We have to make sure that the person we're telling doesn't simply brush it off as a bout of back trouble -- at least two of my former supervisors did that -- that we can simply suck up and deal with. So we have to offer some detail and emphasize the severity of the condition.

At the same time, it gets pretty tiring after a while -- as if we weren't tired enough already -- to have to explain it repeatedly. It would be so nice, don't you think, if we could simply say, "Oh, I have ankylosing spondylitis," and be understood -- without having to fight any preconceptions about back pain or autoimmune diseases, without having to explain why we're not seeing the chiropractor or taking glucosamine or to fend off other helpful-but-useless advice. It'd be nice, but I don't think it's going to happen. It's not that enough of us don't have it; it's just not spectacular or scary enough.

So we're going to have to put up with a certain amount of ignorance about the disease. After 7½ years, I'm used to confused or nonplussed reactions. What I'm not used to is laughter -- which is what I got for the first time on Friday.

Ask MetaFilter is a subsection of MetaFilter, a community blog I've been a member of for more than three years: in this subsection, we can ask each other for advice on just about any subject. On Thursday night a member asked a question about pillows; since I've been using a memory-foam pillow since my diagnosis, I added my two cents' worth, mentioning en passant that I had AS. Without mentioning what AS was, because (I thought) it wasn't germane to the discussion, and explaining it would have taken up my time and their attention.

What followed has since been deleted, but I took a screenshot:



When I read this on Friday morning, I couldn't believe what I saw -- after all, you don't usually see people laughing at cripples nowadays. So I did what everybody does at MetaFilter when their feelings are hurt: I took the offender to MetaTalk, where such issues of conduct and etiquette (as well as other site issues) are thrashed out. And there I got an even bigger surprise:

While people generally agreed that Pretty_Generic was being a dick, they had to concede that "ankylosing spondylitis" was a funny name. (And it turned out that he was laughing at the name, not at me.) One person even chided me for not explaining the disease; otherwise I should expect sniggers because of the funny name.

I was floored. Not once in the nearly seven years since I first heard the name have I ever had that reaction. It never even occurred to me that the name sounded funny. (Considering that I'd been in constant pain for at least six months by the time I'd first heard it, it's no surprise that I saw no humour in the name.) So I wasn't exactly prepared for it.

Fortunately other people thought that this line of thought was bollocks. flashboy made the excellent point that while it's one thing to giggle over a funny name in a pub, it's another thing to make jokes about a disease's name to someone who suffers from it. This is something I'd have thought utterly obvious, but not, apparently, to everyone.

After 7½ years of life with AS I've mellowed a bit: I'm not nearly as defensive and angry about it as I once was. Still, it's a safe bet that if someone laughed about my disease to my face, I'd probably tear out his larynx.

If nothing else, it looks like I'll have to keep explaining the disease for all comers, or at least supply a link every now and then. As a result of this fracas, I've added some links to the sidebar, under "About Ankylosing Spondylitis," to pages that describe the disease. I've also added a list of minor celebrities with the disease -- because, as we all know, diseases only exist if famous people suffer from them. (Sigh. Just one A-lister, and my life would get a lot easier.)