Ankylose This! Living with Ankylosing Spondylitis

Wednesday, February 23, 2005

Wikipedia

I did some work on the Wikipedia AS, iritis and iridocyclitis pages, but they could use lots more work and linking.

iritis

I have iritis.

I'm on eyedrops every hour.

On Monday, I had trouble focussing on the computer screen.
On Tuesday I had very blurred vision in my right eye, like looking through a fog.
Same today.

Of note is that my eye is only slightly pink in parts and at most very slightly sore.
I had been previously told (by the same opthalmologist I went to today) that if I had iritis my eye would be extremely red.

Neither the nurse practitioner nor the medical doctor who saw me at the clinic today diagnosed iritis. The doctor was able to get me into the opthal today, but (at least as she explained it to me) more because she was worried about glaucoma and they don't have a blow tester at the clinic. They did send me off with a referral letter explaining my AS, but it's not clear to me if that was more to save me the $80 eye exam fee, rather than being their main concern.

Anyway the moral of the story is: if you have AS and get sudden eye problems, try to get to see an opthal right away (I called on Tuesday for an appointment but they gave me Thursday 8:30 AM. I didn't tell them I had AS, I dunno if that would have made any difference.)

Friday, February 18, 2005

FDA: Celebrex still okay

The FDA says Celebrex can still be sold.

Food and Drug Administration advisory committee said Celebrex does pose an increased rink to patients taking it, but nonetheless allowed its makers to continue selling it because of the anti-inflammatory's effectiveness in relieving severe pain.

The FDA committee was expected to rule later in the day on two other painkillers in the COX-2 selective inhibitor class, Vioxx and Bextra.

It ruled on Celebrex first because it said the drug seems to pose a slightly lower risk of heart problems than the other two drugs.

Good news for Richard, even if as a Canadian he's not directly affected.

Update 4:23 PM: The article has been updated; Bextra and Vioxx are in, too.

Injectable methotrexate shortage

Apparently there have been shortages of injectable methotrexate. Last fall it was reported that there would be reduced availability through December, but it seems that pharmacies are still having trouble getting it from wholesalers, if this Ask MetaFilter thread is any indication.

FDA on COX-2

The committees will discuss the overall benefit to risk considerations (including cardiovascular and gastrointestinal safety concerns) for COX-2 selective nonsteroidal anti-inflammatory drugs and related agents.

Visit Joint Meeting of the Arthritis Advisory Committee and the Drug Safety and Risk Management Advisory Committee. It's running Feb. 16-18, 2005. They invite public participation.
Electronic comments should be submitted to http://www.fda.gov/dockets/ecomments. Select "2004N-0559-Overall Benefit to Risk Considerations for COX-2 Selective Nonsteroidal Anti-inflammatory Drugs and Related Agents" and follow the prompts to submit your statement.

I tried to find this docket in their system; I wasn't able to. Maybe you will have better luck.

Monday, February 14, 2005

AS data collection

From the comments, where you probably missed it: an anonymous commenter is collecting data on individuals with ankylosing spondylitis, on this page (which looks like it's hosted chez lui via a dynamic IP service).

As of this writing, a total of 161 people have entered their data, of which, among other things,

  • more are female (90) than male (71) -- which says something interesting about reporting, since supposedly males with AS outnumber females;
  • 72.67 per cent are HLA B27 positive;
  • two-thirds are on NSAIDs and one-third are on biologics;
  • 46.58 per cent have a family history of autoimmune disease; and
  • 44.93 per cent have had symptoms of iritis.

The average onset age is 24.21 years and the average diagnosis time is 8.1 years.

Interesting stuff.

AS and TNF

If you're curious about how biologics like infliximab (Remicade) work, have a look at this article, which examines the tumour necrosis factor alpha cytokine, on which anti-TNF agents like infliximab work, and the benefits and risks of using them to treat ankylosing spondylitis.

Tuesday, February 08, 2005

Playing in pain, part 2

The Daily Herald of Everett, Wash., looks at high school wrestler Austin Kintner, who competes despite the pain of his ankylosing spondylitis. (See previous entry.)

Wednesday, February 02, 2005

the latest in vioxx/celebrex death pill news


The heart attack risk linked to Vioxx goes away after a person stops taking the drug, data from elderly Canadians shows.

...

Brophy's team has more good news. Celebrex — at low doses — does not appear to increase heart attack risk.

"Yes, our study suggests that low-dose Celebrex is safe," Brophy says. "This is not a randomized study, so it is not proof of safety. But within the limits of an observational study, our data provides an element of confidence that Celebrex — at least in conventional low dose of 200 milligrams per day — appears to be very safe."

On the other hand, the study confirms that Vioxx — even at a low dose — actually does increase a person's risk of heart attack.

however

"Very few of the Canadian patients took more than 200 milligrams per day of Celebrex — and in clinical trials, the only heart risk was seen in those taking 400-800 milligrams per day," Finckh notes. "From this study we can see that lower doses of Celebrex seem to be relatively safe. I don't think we can say anything about higher doses of Celebrex."

from CBS News rather cheerily titled Vioxx Heart Risk Goes Away February 1, 2005

hip replacement and such

When I was in Halifax, I had hip xrays periodically, and I went to talk to the surgeon, I dunno what he's called, orthopedic surgeon?

Anyway, he said based on the progressive deterioration of my right hip, I would need a replacement in like 5 years. That was several years ago.

I keep in mind that surgeons always want to operate. It is their function, after all. He said the operation would be a snap.

Problem is that even with early 21st century tech, organic beats artificial by far. Replacement hip works great, but wears out in 10-15 years. If you're planning on living long, that means a lot of replacements if you get an artificial hip early in life.

My doctor here in Ottawa wants to slow the degradation in my hip down so that they can delay doing a replacement. She suggests going on methotrexate. Here's a site for one brand Rheumatrex.

Methotrexate seems to have a lot of potential side effects though.
Since it's just the one hip joint so far, I'm not convinced the benefits outweigh the risks of immune suppression and such.

Using something like remicade (~ $14k per year) would only happen after trying methotrexate and maybe other treatments, plus on my 80% drug plan I'm not so sure I want to be on remicade, that's a lot of money each year out of my pocket.


 
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