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.

#HAWMC day 11: wikipedia is totally a source

Wikipedia: The bane of academics and the friend to journalists who need a quick and dirty lesson on something completely out of their field, like stormwater retrofits and non-infringing use.

But, as much as I may enjoy it professionally as a jumping off point (fledgling reporters, take note: It is never OK to use Wikipedia as a source in copy), the psoriatic arthritis entry kind of leaves me cold. It’s as sterile as a an operating room and about as pleasant to encounter. Seriously, take a gander. Back? Good.

If I were to have the endless spare time necessary to rewrite the entry on psoriatic arthritis, I would definitely make a few changes. First, why is it seriously the shortest medical entry ever? And the most sparse? There are lots of details that could be filled in, lots of areas that could use expansion. Starting with everything. Writing one line per subhead does not an article make. It should not take me more time to flippin’ braid my hair than it does to read some copy on a serious medical condition.

Also, could they have found a worse picture to showcase what PsA is? Oh, look, your feet are horrifically puffy and your nails look kind of funky. Other than that, it’s all sunshine and lollipops.

For a jumping off point (and a community-edited source), I guess it could be worse. But I would home someone interested in the disease would click on one of the few links to find something, somewhere that was a little bit more in-depth. Like a children’s book or a comic strip.

#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.

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.

october’s got those orange eyes, but somehow i still lost sight

DSC_2356

Wow, October already. I can’t believe how this year has flown by. In a way, that’s both good and bad thing. I love the fall and am so excited for crisp weather, colourful tights, the state fair and caramel apple cider. But, I had hoped that by this time, I would be feeling better. I thought I’d have the use of my left hand back (incidentally, typing with one hand is super, ridiculously slow), that I wouldn’t walk with the speed (and grace) of an unsteady toddler, that I would feel more healthy scalp than psoriasis. Not so.

At my last doctor’s appointment, we increased my dose of MTX, so now I’m wading through the delightful oral ulcers and a tongue that feels like someone took a razer to it, which are finally, hopefully subsiding. And, after a couple of weeks of feeling yucky, I’m back on the Plaquenil (or rather, the generic hydroychloroquine) in the hopes some triple therapy (in my case methotrexate, hydroxychroloquine and sulfasalazine) will give me some relief.

At work, I’m dealing with a formerly nice gentleman who has turned into a bit of a bully because he doesn’t like something I wrote. It’s actually been quite stressful receiving multiple e-mails a day over the last week saying what a bad person I am. And I was OK with it all until the most recent e-mail, which was just hateful. It’s all the more surprising because I really don’t understand where it all is coming from and the person in question doesn’t seem too willing to explain.

So, I’m having a bit of a hard time reaching for my positive attitude. Or maybe I am reaching for it, but it’s just not there. I just feel worn out and beat down—an attitude at odds with the ridiculously beautiful, sunny day, which is all the more welcome after nearly a week of rain. Maybe I just need a hug or to snuggle with my dog or to receive a few e-mails a day over the course of a week saying what an awesome person I am. Regardless, I think I’m going to go for a walk outside and try to gain some perspective. And maybe a caramel apple cider.

UPDATED TO ADD: For all those people who have ended up here by typing in the song lyrics in the title (sorry!), it’s “Broken Horse” by the Freelance Whales.

don’t open the medicine cabinet

Am I the only one a little bit scared by this idea? No, scratch that: Am I the only one horrified and terrified by this idea?

The rub:

Sheriffs in North Carolina want access to state computer records identifying anyone with prescriptions for powerful painkillers and other controlled substances.

The state sheriff’s association pushed the idea Tuesday, saying the move would help them make drug arrests and curb a growing problem of prescription drug abuse. But patient advocates say opening up people’s medicine cabinets to law enforcement would deal a devastating blow to privacy rights.

I get that allowing law enforcement the ability to know who has been prescribed pain killers would likely make their job easier when it comes to those abusing the drugs. I understand that. I really do. But what about those of us — and I would wager we are the vast majority of opiate users — who take the drug as directed under a doctor’s care? What about those of us with arthritis, fibromyalgia, autoimmune disorders, injury or anyone else with a legitimate need for pain killers? Last I checked, I didn’t sign away my right to privacy when my NP prescribed some darvocet.

I feel that when I go to the doctor’s office, I have a reasonable expectation of privacy. Ditto for when I pick up my prescriptions at my local pharmacy. It’s a shame that some people become addicted to these powerful drugs and some people sell them illegally. But I don’t think that is enough reason to allow Deputy Smith at the local sheriff’s office the right to type my name into a database and see what drugs I’m taking. I hope North Carolina’s legislators see it my way because the alternative — and its implications for other states and privacy rights — is, quite frankly, a little too Nineteen Eighty-Four for my tastes.

not all that

It’s strange to think that health care reform was passed six months ago. Six months ago, there was a lot of hard-to-stomach rhetoric floating around: baby killers, death panels for the elderly and health as a commodity. But, as so many have said — and those with chronic illness know too well — it’s the healthy who have the luxury of seeing insurance that works when you need it as something to be taken for granted.

This health care reform bill is not perfect. It’s not universal coverage. For me, it doesn’t go anywhere near far enough. The provision that will actually help me — relief for those of us with those pesky pre-existing conditions — doesn’t go into effect until 2014. The government is, of course, toting all that happens now, all those who are helped now or who will be helped soon. But, really, I was and continue to be pretty disappointed in the so-called “reform.” Nothing substantial has changed. Sure, I’m glad that in four years, I would have to worry as much about losing my insurance and not being able to get that back.

I know there’s no such thing as a free lunch. I am willing to pay for my health care. But I don’t think it’s right that people should have to choose between eating and taking the medications. I don’t think it’s right that people should have to stop taking drugs that help them because they can’t afford the co-pay. I don’t think the insurance companies should have been the big winner in health care reform, with millions of mandated customers coming their way because of these changes.

There’s a lot more that could have been done if the powers that be really wanted to help the uninsured, the under-insured, those of us with pre-existing conditions. And they didn’t. Maybe in the future Congress will man up and do a proper job of it. But for now, I am not impressed.

strange things are happening

This opinion piece by Frank Rich in The New York Times is spot on. Conservative reaction to the  health care overhaul has been rabid, excessive and, quite frankly, terrifying. Spitting on a black Congressman? Bricks through windows? Death threats? I defy anyone to explain to me how that is a rational response.

Though I support the legislation passed by Congress, it’s more because it’s better than nothing than because I think it’s some miraculous panacea that will suddenly make everything better for everyone — or even just for me. Sure, when the full force of the legislation kicks in, I’ll no longer have to fear losing my job — and more importantly, my insurance — or being denied coverage because I have a pre-existing condition.

But riddle me this: In a few months, when the co-pay support program I’m in stops paying all but $10 of the $200 plus co-pay for some medication I’m on, how will this bill help me then? In all likelihood, I’ll have to go off the only thing that’s really had any effect in managing my PSA, simply because I can’t afford to pay $200 per month for one drug. I just can’t.

So, those of you out there who espouse Sarah Palin’s or Karl Rove’s or John Boehner’s opinion that this legislation is the most horrible thing to ever hit our country, I say, that’s your right to disagree. It really is. But God help you if that’s the only way you can see it. The only way I can see anyone disagreeing with this is if they are lucky enough to be healthy and/or wealthy enough that health doesn’t matter. I’m neither. And I need help.

This health care bill isn’t great, as Dennis Kucinich said; but damn it, it’s better than nothing. So, naysayers, especially those of you in power: Do something productive, join the discussion or go home. Because, really, at some point, your mothers should have taught you the simple kindergarten rule: “If you don’t have something nice to say, don’t say anything at all.”