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.

double edged sword

Methotrexate Teva 100mg_ml 1x50ml

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

Taking a forced vacation from methotrexate due to a drug shortage led me to some interesting discoveries. The first few weeks off the drug, I felt great. Amazing, even. I was less tired; I had more energy; I got fewer headaches. But that didn’t last.

Enter phase two: what I like to call the “remembering why I was on MTX in the first place” phase. I hurt more, so I was exhausted all the time and short-tempered. My psoriasis came back on my scalp. My PsA was definitely much less well controlled—which is funny, because I didn’t think it was doing all that well even on the MTX.

But my awesome NP found a pharmacy that had a supply of the stuff coming in, so she sent in a scrip for me. It has the preservative, which is different but not bad. I took it for the first time in a long time last night, and I feel downright horrible today: nauseated, delightful headache, hot flashes—the whole nine yards. I don’t know if it’s a reaction to the preservative or just to getting back on my favourite highly toxic drug, but there it is. (And it’s not from mixing alcohol and MTX; I was DD for yesterday’s Super Bowl festivities, so I didn’t touch even a drop.)

When I first found out about the drug shortage, it seemed a little like Providence: Maybe this was a sign that I could get off one of the three main drugs I’m taking (which are MTX, Plaquenil and Enbrel) and still be OK. Maybe I can reduce my drug load a bit and still feel the same as I do on them. That turned out not to be the case. And while that definitely bums me out some, I’m glad that I can feel something close to normal even if it takes two injections and 42 pills per week to get there.

rather burn out than fade away

So, I’ve been rather a bad blogger.

I wish I could say it was because I was out being too awesome—though that’s part of it.

Or that I was ill and just couldn’t blog—though I was for a bit (including a nasty bit of laryngitis, yuck.)

Honestly, though, it was mostly just burnout. I was really just over being positive, over being forthcoming and, most of all, over being sick. I’m not really sure why it hit me so hard or why it did right then, but I guess it was bound to happen eventually.

Being accepting, being positive all the time in the face of something that’s not going to get better and not going to go away, that’s really difficult. I had a pretty good run of it: working on 15 years with psoriasis and creeping toward a decade with psoriatic arthritis. For most of that time, I would say I had a damn good attitude. I took my pills on time. I did what I was supposed to do.

But, I’m still sick. And I think it just hit me hard all of a sudden that even though I’m doing all the right things, even though I’m doing everything I should, that’s no guarantee that I’ll feel good or even just OK on any given day. And that sucks, quite frankly. I wish it worked the way everyone says things should, that we would get out what we put into it. I wish it was fair. But it’s not. And I know that.

I just needed some time, I think, to wrap my head around that once more. I needed some time to be negative and to regroup.

What I’m trying to say is I’m done with that.

I’m back.

brand new day

It’s funny how you become kind of a slipcover version of yourself when you blog: some traits get magnified, others eliminated, and everything is told through the prism of my experience. I’m not sure what I look like to all of you, but I do know a thing or two about branding.

What would I want the Nessie brand to be? A wiser, funny older sister type who has been through it all and tells it like it is—but isn’t afraid to get serious. Am I there? I guess you guys would be the judge of that.

I also feel like there is pressure for me to be positive all. the. time. And there’s definitely a place for that; I don’t want to be a Debbie Downer because that’s not who I am offline. But psoriasis and psoriatic arthritis sucks; it’s a raw deal, and I think it’s reasonable to expect some down moments. I am not one of those people who gets all, “I’m sooooo grateful for chronic illness. Yay life lessons!” That’s not me; I’m not all sunshine and rainbows. But I do believe in making the best of things and accepting your situation—even while acknowledging that it’s not fair and it’s a tough break.

My brand? I guess I’m a little bit Jersey and a little bit Canada. And I’m OK with that.

 

Psst! You guys are good! Check out the comments to find out what my lie was.

 

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

always something there to remind me

It all started about seven years ago.

I had just gotten home from an amazing vacation in Bermuda visiting some friends. I was sitting in my first class at a new school when I got the first twinges of what I would eventually be told was psoriatic arthritis. The nearly yearlong wait from first symptom to first rheumatologist appointment was horrific; the only thing my regular doctor would give me while I waited was an old-school prescription NSAID—so I mainlined that and took far more than the recommended daily dose of Aleve.

It’s crazy to think that one thing changed my life so drastically. I’ve had flares and good periods, been on so many drugs and met a ton of awesome people, in real life (thanks National Psoriasis Foundation volunteer conference) and online (thanks, blogging). But I guess it hasn’t changed much at the same time. I’m doing well in the field of my choice—one that’s demanding and difficult for the healthy. I’m married. And I’m happy.

As I sit here, thinking about my life and enjoying my drink of the month (a Dogfish Head Punkin Ale, yum), I’d say I’m doing pretty well for myself, with or without chronic illness. That’s not to say life is perfect—I’ve still got more pain and inflammation than I’d like, and I’m still grappling with some potentially life-altering decisions. But overall, life is pretty good. And I’ll take that.

start fresh

Where has September gone? I feel like just yesterday it was the end of July.

Anyway, this lovely meme has been making the rounds for Invisible Illness Week. I’ve done it since 2009, but it’s always fun to see what’s changed.

1. The illness I live with is: psoriasis and psoriatic arthritis.
2. I was diagnosed with it in the year:  psoriasis in the late 1990s and PsA in 2005.
3. But I had symptoms since: Psoriasis was a quick diagnosed, but I was diagnosed with PsA in 2006, then changed and now I’m back to PsA again.
4. The biggest adjustment I’ve had to make is: changing my footwear options. Seriously, people: How hard is it to make cute, comfortable heels?
5. Most people assume: that only old people get arthritis. Ugh.
6. The hardest part about mornings are: stopping myself from hitting the snooze button. Again.
7. My favorite medical TV show is: Scrubs
8. A gadget I couldn’t live without is: my iPhone. Seriously, how did I get along without that thing?
9. The hardest part about nights are: when I’ve overdone it and everything hurts.
10. Each day I take 10 pills and two weekly injections. 
11. Regarding alternative treatments I: believe they are a part of my treatment regimen but not the whole solution. I don’t function well without the aforementioned pills and injections.
12. If I had to choose between an invisible illness or visible I would choose:  definitely invisible. I’ve kind of got both; psoriasis, when it’s flaring, is extremely visible. It’s better to be incognito, I think.
13. Regarding working and career:  I love my job. Love, love, love it. Who I am is largely defined by what I do. I would put up with quite a bit in order to be able to work.
14. People would be surprised to know: that I’m in my 20s, apparently. My writing voice must sound older because, in real life, people constantly ask my if I’m a student at nearby major university. It’s the freckles, I think.
15. The hardest thing to accept about my new reality has been: that I had a new reality. It’s kind of a bummer.
16. Something I never thought I could do with my illness that I did was: run a newspaper. Successfully. (Though I guess it’s a little early to start celebrating on that front. Stupid bad economy.)
17. The commercials about my illness: I don’t have cable, so I don’t see them.
18. Something I really miss doing since I was diagnosed is: not needing nine hours of sleep to feel fully functional.
19. It was really hard to have to give up: I’m trying not to see things in a pessimistic way. So, instead of giving up heels, say, I’m trying to see it as a chance to expand my rockin’ flats collection.
20. A new hobby I have taken up since my diagnosis is: sewing.
21. If I could have one day of feeling normal again I would: drink some peach sangria and stay up all night reading.
22. My illness has taught me: that even bad things can have upsides.
23. Want to know a secret? One thing people say that gets under my skin is: “You have arthritis? So, what? I totally have that in my finger/toe/other insignificant joint.” Jerks. I have it in just about every joint and mine happens to be an autoimmune disease, so not quite the same.
24. But I love it when people: just accept me the way I am.
25. My favorite motto, scripture, quote that gets me through tough times is: Pretty much all of Job.
26. When someone is diagnosed I’d like to tell them: that they are not alone and that, thought it may seem like it right then, life isn’t over. It’ll just be different.
27. Something that has surprised me about living with an illness is: just how many others are dealing with some kind of chronic illness.
28. The nicest thing someone did for me when I wasn’t feeling well was: get me supplies for the greatest bubble bath of all time.
29. I’m involved with Invisible Illness Week because: our diseases are only as invisible as we are.
30. The fact that you read this list makes me feel: well loved.

new biologic side effects warning

Fda

Image via Wikipedia

I got this new warning about anti-TNF drugs in my inbox not too long ago and thought I’d pass it along:

“The U.S. Food and Drug Administration, or FDA, is warning that people who take tumor necrosis factor-alpha blockers, also known as anti-TNFs or TNF-blockers, may be at risk of infection from the bacteria Legionella and Listeria.”

For the rest, click here.

For the record, I take a biologic: Enbrel, currently. I’ve been on several others (Humira, Orencia, Remicade). Will this stop me from taking it or any other sin the future? No, probably not. But I’ll certainly be careful—as I already am, as much as I can be—in exposing myself to sick people.

loving what you do

What a difference a year makes.

It amazes me to think that this time last year I was actively looking to leave journalism. I was desperately unhappy with my work situation and having to work insanely long production days  simply because of a lack of planning on my boss’ part. I’m convinced this was, in large part, responsible for the insane flare that eventually saw me back on Enbrel, methotrexate and Plaquenil, a therapy I’m still on to this day.

Now, I’m the boss. I am working more hours than I was at this time last year, but I love every one of them. I have discovered a knack for writing columns—thanks, I’m sure, to this blog, which has helped me develop a more conversational tone than is appropriate in the average news story. Even on the verge of crazy weeks, such as this—a back-to-school section, two weekly papers, a monthly paper, the start of football season and weekend events galore—I’m excited to be up to my elbows in what I do.

And though my psoriatic arthritis is not completely controlled and is not where I’d like it to be—and that pesky tendonitis in my left wrist still bugs me from time to time—I’m living well in spite of it. That’s not my goal; I’d love to be back in the remission I enjoyed after my first, long flare. But even if that’s not in the cards for me right now, I’m surviving, even thriving, where I am. And that’s enough.

psoriasis isn’t contagious but awareness is

I got this today in my mailbox, and I think I’ll be giving it a go:

Psoriasis isn’t contagious, but awareness is! Each August, the National Psoriasis Foundation sponsors “Psoriasis Awareness Month,” dedicated to raising awareness about psoriasis and psoriatic arthritis, dispelling myths around these diseases and educating the public. This year, we are putting the lens on life with psoriasis and psoriatic arthritis, with its ups and downs, frustrations and realizations. Do you have a story to tell? We invite you – and the followers of your blog – to participate in the first-ever psoriasis and psoriatic arthritis online film festival.

Submit a short video for the Spotlight on Psoriasis and Psoriatic Arthritis Online Film Festival in one of six categories:

Youth – Calling all kids! Get out your video camera and show us what it’s like to be young with psoriasis/psoriatic arthritis.

Action – Have you taken action recently to help find a cure? Show how you are taking a stand through grassroots advocacy and volunteer activities.

Comedy – Are psoriasis and psoriatic arthritis funny? No! But you can help bring a lighthearted spin on living with chronic disease when you submit a comedic video.

Horror – Sometimes dealing with a chronic disease can be downright scary.

Music video – Got a song about psoriasis or psoriatic arthritis? This category encourages you to let the music flow.

Animation – Superheroes, aliens and talking animals can play a starring role when you tell the tale of life with psoriasis and psoriatic arthritis. Not an animator? Try this software: www.xtranormal.com.

Competition is open to anyone with psoriasis and/or psoriatic arthritis and the people who love them. The grand prize – as determined by the most online votes – is a $500 Visa Gift card. Deadline to submit a video is Aug. 28, 2011.

Read the Festival FAQ and the competition rules and regulations at http://www.psoriasis.org/pam.