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.

back on the ‘roid train

Newseum, Pennsylvania Ave. entrance, in Washin...

Image via Wikipedia (I love the Newseum!)

My impending trip to D.C. has forced me to take a long, hard look at how I’ve been feeling lately. And, if I’m being completely honest, how I’ve been feeling lately would best be described with a shrug and a “meh.” So-so. Comme ci, comme ça. And so on.

As much as I’m looking forward to it—and I so am—I know it will take its toll; there’s the five-hour (or more, if we hit traffic) drive there and back home, the walking around seeing museums (and the Newseum!) and just taking in the sights, the meeting new people and learning new things. All in all, a mix of stressors good and bad.

So, I’ve taken (and will take) some proactive steps to ensure that I can enjoy the trip the fullest and still be functional when I get back home (and have to go back to work the next day). The conference doesn’t start until Sunday, but I took tomorrow and Friday off, too, so the Professor and I can make a leisurely drive up. We’re staying with friends the first few nights, which I find less stressful—and more homelike—than staying in a hotel. The Professor bought me a comfy seat cushion for the car since the 2006 Honda Civic is not the most comfortable vehicle for drives totally more than an hour.

And—the biggest step: I asked my awesome NP for a quick steroid taper, which I started today. I’m not thrilled to be taking it in addition to the triple therapy combo of methotrexate, Enbrel and Plaquenil (and an NSAID and a muscle relaxant and an opiate, if I wasn’t so sensitive to damn things), but I know trying to force my way through will only leave me feeling worse in the end. And—combined with the oppressive heat and humidity (seriously: how is 100 degrees with 90-plus percent humidity normal for the end of May and beginning of June?)—I know just how bad muddling through can make me feel. I’m not going there again if I can avoid it.

So, to anyone who encounters me over the next two weeks: I apologize in advance for any crabbiness, waspishness or general cantankerousness. It’s the ‘roids talking.

 

already pretty: body gratitude in the face of illness

I know I owe you guys two more HAWMC posts, and I promise I’ll write them. But I’ve been sitting on this awesome post for awhile, and, since I’m feeling like doggie doo from my crazy work week last week (and today’s delightful 13-hour work day), I thought I’d let this one roll.

Sally over at Already Pretty tries to tackle a reader question on keeping a positive body image when you have a chronic illness. Though she says she doesn’t have an intrusive chronic illness (invisible illness, anyone?), she hits the nail on the head with many of her suggestions. Why yes, Sally, I do in fact pamper myself with lovely clothes, fun makeup and shiny hair (what’s left of it from stress and MTX, anyway!).

But one of the commenters made a good point that sometimes, I need to give myself permission to not love my body. On a day like yesterday—when I slept until 3 p.m. and still felt exhausted, when a quick trip to the store left me sore and achy—I didn’t like my body very much. I didn’t want to think about all the things I could still do but instead wanted to remember the things I’d lost.

Today, I’m over that, but I think it’s important to allow myself those days—as long as I don’t wallow.

But head on over there; read through the comments, too. I’ll warn you, there are a couple of insidious ones, but they’ve mostly been dealt with already.

#HAWMC day 27: quotable

I love a good quote. The right one can turn one’s day completely around. It can make you feel strong in the face of a bad day or completely turn your attitude around.

One of my most well-read posts was one where I wrote about the “Litany Against Fear.” It’s one of my favourite posts, so here it is again, for your reading pleasure:

Fear is a funny thing.

Since I am, truth be told, a big nerd, the first thing that comes to mind when I hear or see or write the word fear is a passage from Frank Herbert‘s “Dune.” If you’ve read the book, I’m sure you know the one I’m referring to:

I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.

I won’t lie: Fear is a big part of my life with chronic illness. A lot of what I’m dealing with is unknown: How will I react to [insert medication here]? Will it help me, do nothing, hurt me, or some combination of the three? Is how I’m feeling right now my new normal? Will I ever go into remission? For how long? Will I get worse? Will there be better treatments or, dare I say it, a cure in my lifetime?

The answer to all of those things: I don’t know. And, to be honest, that really bothered me for a long time; in some ways, it probably always will. But nothing is guaranteed for anyone. No one can say for certainty what the next year, next month or even next minute will look like.

But for all of that, I don’t think fear is necessarily a bad thing; without fear, there would be no opportunities for courage. Chronic illness, like fear, need not take away our hopes, loves, dreams.We can be brave and still chase down what we want. Sure, it might look a bit different than we’d hoped, but we can get there. And that realisation—that I can still expect great things from myself—that was huge. Giant, even. And so very precious.

I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.
—Nelson Mandela

#HAWMC day nine: worth overdoing

Today, I really overdid it.

All week, I could feel  my body fighting something off. I was fatigued and achy. My throat become sore later in the week. And then, like an idiot, I took my methotrexate injection; I was so drained, I didn’t even think about what a bad idea that was.

And today, I woke up feeling terrible. But today was my local Walk to Cure Psoriasis, and I’d been looking forward to it for months; I wasn’t going to let a little thing like being sick get in the way. Plus, my mum and mother-in-law were coming in from out of town, and I didn’t want to disappoint them.

So, the Professor and I got up early, and somehow made our way over to where they were holding the walk. And it. Was. Cold. Friday was sunny, beautiful, with a high of 83. Sunday is supposed to be about the same. Today? I don’t think it got out of the low 50s, if even that. But we made it through the walk, and then headed out to get breakfast. That was helpful; I had fruit and a bagel and a big glass of freshly squeezed OJ. That perked me up a bit, so my mum, mother-in-law and I headed over to the local flea market. We all found some great stuff—including, for me, this great, 1940s citrine ring and a great, vintage needlepoint broach—before heading back to my mother-in-law’s place. The Professor and I had planned to stay for dinner, but the whole week of just relentlessly pushing myself and ignoring the signs my body was giving me came crashing down. We came home, and I went to sleep.

I don’t know why I keep doing this; I think I can just push through feeling terrible without any consequences. And that’s just not true. Even though I’ve had psoriatic arthritis for almost six years now, it’s a lesson this crazy disease keeps beating me over the head with: There are consequences for every action. Doing one things means I can’t do something else. And ignoring that gives me a day like today. Still, even if it wasn’t necessarily the best of ideas, I’m glad I went out to the walk; it was to see so many people supporting people like me. And that’s just what the doctor ordered.

#HAWMC day two: abstemious

Abstemious: adj. \ab-STEE-mee-uhs\
1. Sparing in eating and drinking; temperate; abstinent.
2. Sparingly used or consumed; used with temperance or moderation.
3. Marked by or spent in abstinence.

Having psoriatic arthritis is a study in refraining. Though I often try to concentrate on everything I can do rather than what I can’t, to be upbeat and make the people around me feel good about my having a chronic, incurable illness, part of being a health advocate means sometimes I have to make it crystal clear what having two lifelong conditions is like.

And, sometimes, it’s marked with things I can’t do, with things from which I must abstain.

Take alcohol, for instance. I am on methotrexate, that wonderfully toxic drug that somehow lets me function more like a normal human being. But it brings with it the potential for liver damage. Since I like my liver and I’d like it to continue working, I have to cut out other things that have the potential to harm it. This is where me abstaining from alcohol comes in. This is harder than I thought it would be. Even though my parents, say, and my in-laws know I can’t drink—and know why—they all still insist on offering me glasses of wine or cosmopolitans. And, yes, I’ll admit that now and then I indulge. But for the most part, it’s not worth it.

Then there are days when I want to abstain from everything. Days my meds aren’t working the way they should and days when I’d love to hit pause on my life and just sleep until I felt better. But in all honesty, I take methotrexate and many other pills so that I don’t have to abstain from doing most of the things I love. And that makes giving up the few things I do have to let go that much easier, in the long run.

(IU)D-Day

I finally did it. I  bit the bullet and got an IUD put in Thursday. Though I know there are several choices out there, I went with Paragard. (Apparently people on immunosuppressants shouldn’t use Mirena; who knew?) Except for the financial part (my insurance doesn’t cover contraception, apparently, because we’re in the Stone Age), it was an easy decision: I don’t do well on hormonal birth control, I’m on MTX and need highly effective contraception (hello drug used in abortions and can cause massive harm to a fetus!) and I don’t need to think about my IUD until a) we decide to have kids or b) it’s 2021 and it needs to be removed. That’s right. It’s good for 10 years.

Getting an IUD just made sense for us, though clearly it may not be the right choice for everyone. With all the problems I had with hormonal birth control (hello no sex drive and lots of random mood swings!) and our desire to not have children for at least two years, it just made sense. Plus, it means I get to get off one drug. How awesome is that?

Getting the IUD inserted and the few days after were definitely an … experience. There’s a ton of stuff I wish I had known; it wouldn’t have changed my mind but I certainly would have been more prepared. And I like being prepared.

For example, I am used to needles. I give myself an injection of MTX and ENBREL every week. But the needle used for the pre-IUD insertion block? Sitcom large. That pictures is only a slight exaggeration.

Would I have backed out had I known a two-foot-long needle was going to be inserted into my bajingo? Nope, of course not. It would have been nice to have prepared myself for that eventuality, though.

Second: I was told to expect minor cramping after the procedure.

Minor cramping my ASS.

For the rest of the afternoon, I spent my time on the coach holding a hot water bottle to my abdomen and grimacing, curled up on the couch watching copious amounts of “Law and Order: Special Victims Unit” while mainlining lemonade and Cadbury Mini Eggs.

The Professor was kind enough to keep me fully stocked in anything I needed, even though he had plenty of work to do getting ready for his next lecture. I have never had such painful cramps in my entire life. Seriously, for the rest of the weekend, I stopped taking my prescription NSAID so I could ingest as much Midol as was medically advisable. (Random aside, why are there so many formulations of Midol? I seriously spent 10 minutes at the drug store staring at the shelf just lined with different versions of the same thing before closing my eyes and picking one, just so I could leave the store.)

Only two things really helped: Streak fries and, umm, well, I’ll let the cast of Scrubs say it for me:

That first five or six hours, I was in the bathroom so long I read an entire issue of National Geographic from cover to cover. I still am not really sure what that was about, but I’m glad that part is over.

The rest of the skinny on the IUD: I apparently can look forward to heavier periods and cramps from now on. The worst of it is supposed to be the first year, so I guess I’ll find out.

But even if all of that is true and even with the fallout from the first couple of days after the insertion, I’m still glad I made the decision I did; fewer pills and the increased likelihood that we won’t get pregnant (though we still will continue to use two methods of contraception, as is indicated for women of childbearing age on MTX) is no small matter. If this can help me get one step closer to normal, I’m glad I did it. Though, if I had been a normal, healthy twentysomething, I’m not so sure I would have even considered this. I guess that’s something I’ll never really know, though. So, with the life I live now—in reality—I’m extremely glad I did it. And even with all the quirks, I’d do it again.

raise the roof with shouts of joy

What a crazy few weeks.

I’ve been plagued for the last couple of weeks with these weird headaches; they feel almost like migraines—head pressure, nausea—but the pain isn’t nearly as intense, and no light sensitivity accompanies them. I’m not really sure what’s causing them, though I have some ideas: stress, lack of sleep or maybe some food trigger. (Or maybe it’s my new awesome glasses. More on those later!)

I guess it’s kind of a blessing in disguise, though; by the end of the week, it makes me go to sleep earlier, which is always a good thing. I don’t sleep well in the best of circumstances, so a few extra hours can really make a difference.

Even with this weird new symptom—and the feeling, despite the Enbrel, the MTX, the Plaquenil, that my symptoms are hiding just beneath the surface, that I’m not in a true remission—I have had a good week; I’m enjoying my new position, my new employee has arrived and she is awesome. My boss is happy with me. I’ve finally found a good concealer that hides my under-eye circles and looks natural. I’m going to get to make some jewelry this weekend, and eat some good food while watching the Steelers (I married into a Pittsburgh family). I see my NP this week and have good news for her for once, instead of the same slow and steady decline. My psoriasis is all but cleared up; I’ve just got a few small patches on my scalp, hidden by my hair. Hell, I’ve even worn heels twice this week!

Despite the bad, it’s really easy to find the good this week. And for that, I am really, truly grateful. I am reminded of the promise contained in this verse, that even when things are bad, they will get better:

God will let you laugh again; you’ll raise the roof with shouts of joy. [Job 8:21]

D(r) day

US Navy 050627-N-6495K-036 Physician's Assista...

Image via Wikipedia

Today was my long-awaited trip to see my rheumatologist to find out if we could come up with some kind of plan to get me back on track. The Professor was with me, and he was very good at making sure I didn’t leave anything out—and if I did, he piped up. I definitely felt as though she heard me and understood how unlike myself I’ve been feeling.

The NP seemed shocked by how poorly I was doing when we ran down the list of symptoms: lots of pain, joint pain in new places (like my jaw, which pops all the dang time now), sleeping poorly, muscle pain, fatigue, brain fog, the weird (and likely) pleuritic chest pain…. It felt like the list went on and on. Both she and the student physician’s assistant with her gave me a full exam.

She decided to pull me off the sulfasalazine, but keep me on the methotrexate, the hydroxychloroquine (Plaquenil) and the NSAID. (She was flatly against the idea of Celebrex, which I suspected she would be. We’ll see how Dad takes it, though.) I’m back on the Enbrel, and she gave me a few samples to take home until I can get things straightened out with my insurance and the co-pay assistance program. Since Darvocet was taken off the market (and I wasn’t a huge fan, anyway), I’m going to give Percocet a try. If that doesn’t work, I’ll be on the Tylenol with Codeine, since I’m super sensitive to pain killers. She also suggested a steroid injection before I go up to Canada for the holidays, since it should help me get through the stress of driving up and driving back.

I’m hopeful this will work. I was certainly doing better while on Enbrel, and maybe in conjunction with the Yellow Dart and the Plaquenil, I’ll start feeling like myself again. Maybe I’ll even be able to pull my heels out of the closet again. That seems so far from where I am right now. But after that appointment, one phrase is back in my vocabulary: I hope.