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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standing on a mountain looking down

The thing about working in a community newspaper is you always have to be on.

As the editor of a small weekly, I am a champion, punching bag, easy target, reporter, photographer, layout designer, copy editor, information source and more that I’m probably forgetting.

My picture’s in the paper twice—once in our staff box and once in my weekly column—so there’s nowhere to hide. There are no days off; I’ve been stopped in Walmart more times than I can count by readers or sources who want to sound off.

The biggest thing, though, is a mixed blessing: People see the paper as their paper. Each little thing that happens in the community, why, that should be in the paper! And, as the editor, my policy is to say, yes—though that yes may not take the form the person asking wants.

Regardless, it can all be a little overwhelming, especially with elections (tomorrow, eek!) and small-town sports and all the great things that happen in my town.

It may sound like I don’t like it, but actually it’s really invigorating. I think know that people don’t realize exactly how much goes into putting the paper together every week—and how it’s just me, essentially, and one other reporter doing everything except the ads.

But even though I’m still at work now sitting in a school board meeting, ready to finish out what I’m sure will be a 12-hour day, and even though tomorrow promises to be just as long if not longer, I am ready. I’ve got eight bylines this week, and my reporter has as many, on everything from a high school attendance program to a cross-country state championship. I’ve got election coverage to get in Wednesday’s paper for four races and a county referendum.

And we’ll get it all—and it’ll be interesting, pretty to look at and compelling.

So, get ready, Tuesday; we’re coming for you.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

one turn and now i’ve learned what it really means to see

Today’s prompt reminds me of one of the questions that we ask student athletes in a feature we, creatively, call “Athletes of the Week.” This question routinely stymies our young respondees, mostly, I think, because it’s so broad. The question? “What is your dream job?”

When I read today’s prompt (if you could do anything as a health activist—money being no object—what would it be?), I imagine I had the same look on my face that I get each week from the high schoolers I interview: bug-eyed, slack-jawed amazement. My mind was a complete blank.

What would I do to benefit the arthritis community, the chronically ill, those with invisible illnesses if money or anything else was no object? Where do I even start? There are the obvious ones—universal healthcare, universal access, ending discrimination, affordable drugs—but is that enough? An affordable cure would render everything else moot, so that seems like a no-brainer.

But how much control to I really have over that? Not much. Which brings me to, perhaps, a more realistic question: What would I do based on the very real limitations that I have? I think raising awareness is huge; when most people think arthritis, what they’re really thinking of is osteoarthritis. Having people know that there are multiple kinds of arthritis—kinds that are nothing like what you’re got in your little finger or what Grandma’s got in her knees—well, that would be a start.

Still, it’s not enough. I think what I’d really like to achieve is the call to action: getting people to care enough to donate money, participate in walks, to write letters to the editor and to their members of Congress. Basically, I want for autoimmune arthritis and psoriasis—hell, all these diseases we all struggle with—is what Susan G. Komen for the Cure has done for breast cancer. I want people to associate the colour blue immediately with arthritis the way they do pink with breast cancer.

Can I do it on my own? No, ma’am. But maybe with all of us working together—joining forces as those with autoimmune diseases instead of each of us focusing solely on our disease—it could happen.

 

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

spoonie envy, or why my disease is worse than yours

I overheard something that makes me me angry, frustrated and really sad all at once. A woman was talking about her rheumatoid arthritis, something a (younger) family member has as well. But then she said, offhandedly, “Oh, her RA is nowhere near as bad as mine.”

I have several problems with that statement.

First, how can any of us really know the pain someone else endures? Most of the time, I look—and act—100 percent pain-free; many would not guess that I have psoriatic arthritis, that I’m multiple drugs just to keep me functional though hardly without pain. Since none of us can actually slip into another person’s skin, not a one of us can say with any certainty, “My pain is worse than yours.” Period.

Then, of course, is the fact that it’s not as though it’s a competition, as if there’s only a finite amount of pain in the world that must be gobbled up in order to garner the sympathy of others. The fact that someone else is hurting doesn’t actually have any impact on the amount of pain I’m in—which is why I’ve never understood when people say, “Oh, you shouldn’t complain. [X person] has it sooo much worse than you.” I always want to bop people who say that on the head; my aches and inflammation aren’t conditional upon those of someone else. My pain doesn’t diminish because someone hurts more.

But perhaps more import than both of those points is this: We could all do so much good if we weren’t so concerned with who gets to wear the pain tiara or with maintaining the division of diagnoses that run between us. Separately, those of us with various kinds of autoimmune arthritis—or even just autoimmune diseases—don’t have the numbers to have as much clout as, say, Susan G. Komen for the Cure. But together, we number in the millions; the many can do more than the few. Why not pool our resources so we can really get some stuff done? Imagine if as many people who donate for breast cancer research or to the American Heart Foundation knew—and, more importantly, cared—about autoimmune disease. That would be huge. But we’re certainly never going to get there—or it will be a long time coming—if we can’t all work together.

#HAWMC day three: stupid questions

Though it’s been said, “There are no such things as stupid questions”—hell, I’ve even said it myself—some of the queries I’ve been subjected to as a result of my psoriasis or psoriatic arthritis make me want to change my mind about that nugget of popular wisdom.

The granddaddy of them all, however, is probably the most harmful question those of us with (mostly) invisible illnesses face: You look so healthy/normal; how can you be sick?

Of course, psoriasis isn’t necessarily invisible; the itchy, flakey, red, angry patches are easy to see if they’re on a part of the body that’s easily seen, like your face or hands. Luckily for me, my psoriasis is mostly confined to my scalp (at the moment), though it hasn’t always been that way.

And for some people, arthritis isn’t invisible, like the destructive form of psoriatic arthritis mutilans. But for me, in both cases, it mostly is. So, why is it so hard to believe that people could be struggling so hard just to look normal when they do, in fact, look completely healthy?

Well, at least in my case, I try really, really, really hard to make myself seem normal. I do my hair. I put on makeup. I wear nice clothes and shoes. I drink caffeine to give me energy. I take lots of pills to keep the pain and stiffness at bay. I sleep an insane number of hours on the weekend and try to take it easy after work. There’s actually quite a bit of effort into looking and acting effortless.

People often also have an expectation that the sicker you are, the worse you should look. There have been days when I have felt exceptionally horrible and no one was the wiser. That’s kind of the point: It’s an invisible illness. It’s not out there for the whole world to see in the same way being in a wheelchair is.

So here’s the rub: Just because we don’t look sick doesn’t mean we’re not. Just because we look like we’ve got everything under control doesn’t mean we do. And just because we’re good one day doesn’t mean we will be the next. That, my friends, is the fun of an autoimmune disease.

so much to say

Which medicines to take—and whether to take them—is definitely a pressure I’ve felt as a person with two chronic illnesses: psoriasis and psoriatic arthritis.

Sometimes those pressuring me to take fewer pills and injections may have good intentions: take more vitamins, eat fewer nightshade vegetables, exercise more or differently, take XYZ miracle cure.

While I appreciate the (I hope) kindly sentiment behind those and other suggestions, I find the implications behind people’s repeated suggestions that I manage my diseases differently a little offensive, as if I don’t know what I’m doing. I have done the research into my treatment. I have looked into alternative and natural solutions, and I incorporate a mix of modern medicine and natural options. As I’ve mentioned before, I became a vegetarian in an attempt to help my symptoms; despite what some people think, I don’t eat pork, beef, poultry or seafood, and I’m working to cut out as much dairy and egg as possible, except if I know the source (i.e. I pick it up at my local farmer’s market and I can ask the farmer who produced it how he made it).

But my decision to do this was based on my own research, my own experiences. It was a decision that I made and was supported by my doctor and nurse practitioner. As it turned out, it was the right decision for me and has helped alleviate some of my symptoms; it certainly is not a cure and I would be insane to get off the drugs I’m on.

I think the ideas espoused by Dr. Lee are dangerous.

To wit:

JRA is usually temporary, and only in rare cases does it last a lifetime. Most commonly, it disappears as the child matures. This is due to the strengthening of the child’s immune system and energy over time.

Oriental philosophy traces these negative responses to the child’s conception and gestation. It is believed that pregnancy should be a planned process with both parents being in ideal health condition prior to conception. The proper weather on the day of conception also plays a part, as well as the energy of the parents, which also includes genetic influences.
Stress, anger, medications, vaccinations, emotional problems, drinking and drugs all affect the child throughout conception and gestation. These factors cause the parent’s energy to be imbalanced and it is passed along to the baby, which presents itself as a weakness of some sort after the baby is born.
This is one of two philosophies behind all infantile or early-childhood diseases. The other stems from environmental problems, such as radiation from electricity, poisons or pollution in the environment and household, toxins in food, and poor nutrition.
The best treatment for these children is daily massage of the affected areas, better nutrition, reduced stress, light acupuncture and moxibustion treatments, herbs, and added love and affection.

Telling people JRA is “usually temporary” is setting them up to blame themselves when their child—shockingly—does not get well with massage, good eats and love. Auto-immune arthritis is not the result of my parents’ bad energy or stress; it’s not their fault because they would not have wished it on me had it been in their power to prevent it.

This article is taking the nosy, think-they-know-better-than attitude that I’ve experienced from family and friends and people I barely know to the extreme. If massage, affection and herbs were enough to make me feel normal, I wouldn’t be taking multiple potential toxic drugs.

What would I like to say to all the people out there who think they know better than I do or my doctors do? What I would like to say is neither politick nor productive. So, what I’ll say is this: You are entitled to your opinion as to what you think is the cause of my disease and what you think the best treatment would be. But until you’ve lived it the way I have, until you have felt the pain and exhaustion and fear, until you’ve felt the relief brought by these dangerous drugs and experience the indecision as to whether you should go on them or stay on them, your, perhaps well-meaning, advice is not worth much. Modern medicine—yes, the methotrexate, the ENBREL, the Plaquenil, the etodolac—is the only thing that allows me to get up every morning, to get dressed, to go to work, to be a good wife, to walk my dog, to do everything I do. Without them, without the right combination of them, I am in intense pain, I’m stiff, I can’t focus or remember the sentence I started just a few words ago. Without the meds, I would not be able to hold down a job, to be a productive member of society.

Yes, I do other non-medicinal things to increase my overall health: I’m a vegetarian, I do yoga. I am open to adding other things to my regimen, to my arsenal. And doing most or all nutrition or acupuncture or herbs works for you, that is wonderful. But it doesn’t work enough for me to cut out the drugs that allow me to function.

So, I guess that’s the biggest thing I would want the people who expound on their chosen “cure” to know is this: What works for one person won’t necessarily work for someone else. And what works for one person won’t necessarily keep working for her. Those of us with chronic illness have to be willing to try almost everything; but recommending the equivalent of a Band-Aid or sugar water for our very real problems doesn’t help. If you really want to help, stop talking and start listening.

why i don’t eat animals

Cover of "Eating Animals"

Cover of Eating Animals

For my long trip this past week, I knew I would need something to keep me entertained in the car. I love to read, but doing it in a vehicle usually ends in tears (or at least nausea) for me. I decided to give audio books a try, and so I downloaded “Eating Animals” by Jonathan Safran Foer (of “Everything Is Illuminated” fame) to my iPod.

“Eating Animals” is the story of Foer’s decision to delve into what exactly is it we’re eating when we pick up a pork chop or chicken nugget and pop it into our mouths, something that became important to him with the birth of his son. Though Foer is vegetarian, it’s not a book that tries to convince you that’s the only way to eat; instead, Foer discusses the horrors (and really, it’s awfully horrific) of factory farmed animals’ lives and deaths.

Before reading (or rather, listening to) this book, I was already a vegetarian. My reasons were mainly those of health: having psoriasis puts me at a higher risk of metabolic syndrome and, quite frankly, eating meat just made me feel bad and often triggered flares or mini-flares. It just wasn’t worth it to eat animals anymore.

After listening to this book, my decision to go veg is now also influenced for reasons of animal welfare, if not necessarily animal rights. The atrocities Foer mentions are unnecessary but an unsurprising by-product of a system (factory farming) that sees animals as dollar signs and workers as expendable.

I just don’t see the need to pay into that system, to give my farming proxy, as Foer put it, to some big corporation shoving antibiotics and God knows what else into these animals, keeping them as sick as possible because that maximizes profits.

So, now, my goal is to make sure none of my dollars go to factory farms: not for eggs or for dairy. In fact, I’m going to minimize my use of those two groups by either doing without or using substitutes. (If anyone knows of any good ones, please send them my way! I haven’t had much luck with dairy substitutes.)

Now, I’ve just got to convince the Professor to stop eating factory farmed meat and go with locally raised animals, and we’ll be all set. And if I could get people to stop accidentally feeding me animal products (I’m looking at you, quinoa cooked in beef bouillon) or telling me lobster/fish/poultry isn’t meat (duh, of course it is; those are all animals), then I’ll really be good to go.

So, if you’re interested in food, animal welfare or rights, public health, increases in autoimmune disorders, vegetarianism or you just eat meat, this is a must-read.

jingle all the way

So, I was inspired by Mariah’s decision to participate in the 2010 Jingle Bell Run/Walk for the Arthritis Foundation. While I may not be the fundraising juggernaut she is, I figured why not throw my hat into the ring, try to raise some money for a great cause and try to walk 5K—which, with how I’ve been feeling lately, will be a feat of itself.

I’ve started my goals pretty modestly—$200 and five people on my team. Well, there’s already me and the Professor, so I’ll at least have someone on my side as I’m walking (limping?) down the road. I’m going to try to get my in-laws and my parents involved, too, and that would bring me up to more than five if they’re all on board.

I know there aren’t walks in every city, but if there’s one near you, get involved! Or feel free to donate some cash to my team. It doesn’t have to be much; really anything at all would be appreciated so very much.

Participating in this run/walk is a big step for me, one that started with this blog. I can’t be the advocate I want to be if I’m hiding the fact that I do have autoimmune diseases and they’re not going anywhere unless people stand up and start making a lot of noise. We all deserve a cure. And I, for one, will not longer leave the work of advocating for that to someone else, someone who is a little more comfortable than I am being out in the open about my psoriasis and about my psoriatic arthritis. Because, really, we and I have nothing to be ashamed of; we didn’t do anything to deserve our illnesses and me hiding behind a facade of healthiness won’t do much to change people’s ideas of what arthritis looks like. Yeah, it’s definitely scary to put myself out there like this, but I think it’s something I have to do.

Here goes.

another recall

Logo of the U.S. Food and Drug Administration ...

Image via Wikipedia

Right on the heels of the methotrexate recall from a few weeks ago, here’s another: The FDA pulled Darvon and Darvocet from the market. It is the most recent painkiller to be prescribed to me, but as it’s not one I took very often, it’s not the blow the MTX recall was. Still, it’s just one fewer weapon in my arsenal to fight the psoriatic arthritis.

It’s kind of scary that, after decades on the market, a drug that was thought to be safe could be pulled off, just like that.

It makes me wonder what we’ll learn about the drugs we’re on now 10, 20 or 30 or more years down the road. I guess it’s a balancing act for patients: On one side of the scale, we’ve got to trust our physicians, pharmacists, the FDA, everyone involved in allowing us some semblance of health; on the other, we’ve got to do the research ourselves and trust our guts if we feel as though something isn’t right for us. I guess it all really just underlines one thing for me: the need for a cure. For all of us, regardless of our autoimmune disease. One day—maybe even within my lifetime—I would love to be able to take some treatment, pill, whatever and be done with it all. Until then, though, I’ll keep slugging alone, taking whatever drug straddles the line between helping and harming.

not so young, not so fast

via National Psoriasis Foundation

via National Psoriasis Foundation

World Psoriasis Day is today, Oct. 29. The focus this year is something near and dear to my heart: the challenge of childhood psoriasis.

While I may have been too old for teddy bears when I was first diagnosed with psoriasis, I was pretty young: about 14 or so years old, a freshman in high school.

I was lucky to have not been teased so much for the fact that I had psoriasis as much as I was for being Canadian, but it was still there. I was certainly luckier than some kids: 38 percent of kids who responded that they had been bullied in the last six months (in a National Psoriasis Foundation survey) said the bullying was the result of their psoriasis. When I first read those statistics, my heart broke a little. Sure, kids can be cruel, but this kind of ignorance is inexcusable.

What’s also devastating is this: There are no FDA-approved treatments for children with psoriasis. None. Zip. Nada. And every year, 20,000 children under the age of 10 are diagnosed with psoriasis. I know from experience that there wasn’t a lot offered to me when I was diagnosed. My dermatologist at the time didn’t tell my mum, who came to the appointment with me, and I that it was an autoimmune disease; in fact, he let us leave the appointment thinking it was a reaction to a new shampoo. I’m pretty sure the only thing he gave me was something tar-based that I was supposed to leave on my head all night long and rinse out in the morning. It smelled awful, it made my hair look and feel terrible and it didn’t do me a whole lot of good. I remember at subsequent follow-up appointments, he blamed me because my plaques hadn’t cleared up yet, saying I must have not bee using the topical properly. At the time, I believed him, even though I followed the prescription directions to a tee. Now, of course, I know that wasn’t the case. Psoriasis doesn’t always respond to medication and it certainly was not my fault the plaques were still there by the next time I saw Dr. Jerkface.

I don’t think kids or people of any age should have to go through that or the teasing or, yes, bullying of their peers. Enough is enough. Kids are being forced to grow up so damn fast these days and those with chronic illness have that extra burden on their shoulders. We should be doing all we can so that they can stay young and innocent and carefree as long as possible.