more on the methotrexate shortage (and a short rant)

Methotrexate Teva 100mg_ml 1x50ml -pakning

Methotrexate Teva 100mg_ml 1x50ml -pakning (Photo credit: Haukeland universitetssjukehus)

I stumbled across this article from the Grey Lady via Rheumatoid Arthritis Guy on the critical need for more methotrexate. The article says, in part:

“This is dire,” said Valerie Jensen, associate director of the Food and Drug Administration’s drug shortages program. “Supplies are just not meeting demand.”

The drug is methotrexate, and the cancer it treats is known as acute lymphoblastic leukemia, or A.L.L., which most often strikes children ages 2 to 5. It is an unusually virulent cancer of white blood cells that are overproduced in bone marrow and invade other parts of the body.

The cancer commonly spreads to the lining of the spine and brain, and oncologists prevent this by injecting large quantities of preservative-free methotrexate directly into the spinal fluid. The preservative can cause paralysis when injected into the spinal column, so cannot be used for this disease. Methotrexate is also used to treat rheumatoid arthritis.

Ben Venue Laboratories was one of the nation’s largest suppliers of injectable preservative-free methotrexate, but the company voluntarily suspended operations at its plant in Bedford, Ohio, in November because of “significant manufacturing and quality concerns,” the company announced.

Since then, supplies of methotrexate have gradually dwindled to the point where oncologists now say they are fearful that shortfalls may occur at many hospitals within two weeks.

I’m not really sure what’s going on with the manufacturing of MTX. According to the FDA, several companies that make the injection form of the drug simply decided to stop making vials of certain sizes. I don’t know why and haven’t been to be able to find much information about it. I’m generally not a conspiracy theorist and tend to (want to) believe people will do the right thing, but there doesn’t seem to be much reason for creating a shortage of a drug that treats childhood cancer—and several autoimmune diseases.

Which brings me to my short rant. Just a post script for the N.Y. Times: Many of us are on methotrexate, and we don’t all have rheumatoid arthritis. We have lupus and psoriatic arthritis and ankylosing spondylitis and so many other diseases. Maybe a better way to note that MTX doesn’t only treat cancer is to say that people with certain kinds of autoimmune conditions—like R.A.—also take the drug. Just saying.

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n.y. times take on psoriasis

Yvetta Fedorova / N.Y. Times

The N.Y. Times had an interesting article about psoriasis today.

The author, Jane Brody, hits the high (or low, depending on your perspective) points about having the disease: the shame and embarrassment that so often is an unwelcome side effect; the underlying immunological factors; that genetic and other factors contribute to psoriasis; the various comorbitities that can wreak even more havoc on a person’s life.

And she should know; her husband has psoriasis (well, she writes he had psoriasis—but we all know that even if it’s in remission, it’s never really gone).

Brody shares some good tips for psoriasis sufferers: don’t scratch the legions—no matter how intense the itch; be patient; moisturize, moisturize, moisturize; and, of course, seek treatment.

Overall, I thought it was a good piece, though I would have been interested in hearing from her husband, to hear more of how it has been for him in his own words. Maybe it’s just me, but I like hearing the stories of others with the disease; I like swapping war stories and treatment solutions, like finding out the crazy things doctors say to us that weren’t funny then but have to be funny now.

Most of all, I like it when people with the disease are allowed to speak for themselves, to be their own voices, instead of having healthy people speak for us. I wouldn’t go so far as to accuse the Grey Lady of ablism—I’m not so sure that’s what’s at work here—but it would be nice if one of the 7 million people with psoriasis would have been tapped to write something. (N.Y. Times, in case you’re wondering, I am always available to write a piece. Just saying.)

Regardless, it’s nice to have some pub—especially good pub like this—in a newspaper as widely read as the N.Y. Times. It can only help when good information is put out there; maybe next time readers will see someone with psoriasis and not edge away. I’d call that a victory.

new turkey(less) day plans

Thanksgiving Dinner, Falmouth, Maine, USA 2008

Image via Wikipedia

My vegetarian journey is going pretty well. Meat (of any kind: pork, beef, poultry, seafood; some people keep making me things with seafood in it because it’s not meat, apparently) is definitely one of my triggers; every time I accidentally eat some (there are animal products in tons of things I never would have thought of), I feel pretty terrible the next day.

Now, since the mister and I are going to my in-laws for (American) Thanksgiving, I’ve been trying to find some vegetarian options, so I would have mountains of mashed potatoes and cranberry sauce for dinner that night. Once again, the New York Times has pulled through for me. On their health blog, Well, they’ve created a new feature: Well’s Vegetarian Thanksgiving. Every day until Thanksgiving Day, they’re adding another vegetarian recipe perfect for the holiday. Right now, I’m loving the maple roasted Brussels sprouts, the Thanksgiving roasted root veggies and the skillet macaroni and cheese, and so many more.

So, now I’m psyched again for a tasty Thanksgiving, even if it’s not the traditional one I remember. Thanks, New York Times!

can i have phil mickelson’s psoriatic arthritis?

via AP

Golfer Phil Mickelson’s recent announcement that he has psoriatic arthritis has been blowing up my Google Alerts since his press conference. And though I have read many of the articles about it, I’ve found most of them to be incredibly disappointing. Many of the reporters evidently decided to take what Mickelson said about PsA at face value, instead of doing the five seconds of research that would suggest that starting Enbrel does not mean everything will be coming up roses.

Here’s some of what Mickelson said at the press conference as well as an NBC reporter’s take (via NBC Sports):

Weekly shots have brought the disease under control, and Mickelson said there shouldn’t be any negative impact on his long- or even short-term health.

“I’m surprised at how quickly it’s gone away, and how quickly it’s been able to be managed and controlled,” he said. “I feel 100 percent, like I say. But when I (was) laying there on the couch and I (couldn’t) move, yeah, I had some concerns. But I feel a lot better now.”

Weekly shots of Enbrel lower his immune system, and Mickelson said the difference was noticeable almost immediately.

“I feel great now and things have been much, much better,” he said. “I’ll probably take this drug for about a year, and feel 100 percent. I’ll stop it and see if it goes into remission and it may never come back. It may be gone forever.”

“It’s not that it’s cured, but it may never come back,” he added. “Or if it does come back, I’ll start the treatment again and should be able to live a normal life without having any adverse effects. So I’m not very concerned about it.”

Wait, what?

I’m pretty sure that’s not how it works. Since Mickelson went to the Mayo Clinic, I’m hoping his doctors told him biologics, like Enbrel or Humira or Orencia or Remicade — all of which I have been on and all of which stopped working for me after a promising beginning — don’t necessarily always keep on working. For some of us, they may never work or they just might stop helping after awhile.

Regardless, psoriatic arthritis — a chronic, potentially debilitating condition — is something to be concerned about regardless of whether the current treatment is working. This New York Times article does better job of explaining what Mickelson faces. And I get why Mickelson is (hopefully) just downplaying the seriousness of what he has. When I was first diagnosed, I didn’t really want to face it either. I did the same thing, though my doctor’s optimism led me to believe it wouldn’t be so bad.

Still, it’s really disappointing that the many reporters didn’t take the time to take a step back and phone a dermatologist or a rheumatologist or even hop onto the National Psoriasis Foundation’s website to find out more than what Mickelson was saying. Now, I’m sure there are many people out there thinking PsA isn’t a big deal, that it’s just a matter of popping onto a drug for about a year and everything will be hunky-dory. Never mind that Enbrel, and other biologics, are powerful meds with potentially dangerous side effects. Never mind that psoriatic arthritis is different than the arthritis Grandma has in her knee, that it’s a chronic condition.

I think it’s a shame that what could have been a really great opportunity to raise awareness about immuno-arthritis and other chronic illnesses has turned into a joke, with sports writers devoting more space to Mickelson’s turn to vegetarianism than to his disease.

I hope that Mickelson’s predictions come true for him. I hope it does only take a year on Enbrel and his symptoms never come back. But even if they don’t, his PsA isn’t gone just because his joints don’t hurt. I hope Mickelson’s symptoms go away for good, but I won’t hold my breath.

interesting, very interesting

At the risk of making this a blog exclusively about PsA, here’s a great link from a February 2009 New York Times article about the mother’s effect on her baby’s immune system.

Researchers have long wondered how pregnant women might shape their fetuses’ development — by protecting them against later disease, perhaps, or instilling an appreciation of Mozart.

Now a group in California has discovered a surprising new mechanism by which women train their fetuses’ budding immune systems: the mother’s cells slip across the placenta, enter the fetus’s body and teach it to treat these cells as its own.

A crucial task of the developing immune system is to learn to distinguish between foreign substances and the self. It is tricky: the system must respond to outside threats but not overreact to harmless stimuli or the body’s own tissues.

The new findings show “how Mom is helping to tune that whole system early on,” said William J. Burlingham, an immunologist at the University of Wisconsin, who is not connected with the research. “It’s a major advance, very new and very exciting.”

The work could have relevance to research on topics as diverse as organ transplantation, mother-to-child transmission of H.I.V. and autoimmune disorders like Type 1 diabetes.

“It points the way to a huge range of biologically significant questions that are worth exploring,” Dr. Burlingham said.

(Found via Understanding Psoriatic Arthritis.)

I think this is fascinating, and it represents a brave new world in how the immune system works. I don’t understand it all myself (yet; I may have to go to nursing or med school just to understand the research around my disease!), but even I can see the implications.

Really interesting. I’m not sure what implications this has for me as a person who may want children one day, but it gives me a jumping off point and a lot to think about.