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.

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I could teach you

I was thinking about what I know well enough to teach a class in, and that led me to the classes I’ve actually taught over the last few months.

I’ve did a session on column-writing at my company’s editorial conference (which blog writing has definitely helped me with). I taught a class at my local state university on community journalism. I’ve taught a high school journalism class a quick and dirty design and style class. I’ve done tips for getting your story into your local paper.

So, I guess most of my talents lie with journalism and writing and newspapers. I could definitely learn you all a thing or two on that.

What would you teach?

This is a part of National Health Blog Writing month–30 posts in 30 days.

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

the case of the missing monocyte

This came across my inbox at work, and I thought it might interest some of you, as it did me:

The case of the missing monocyte

 

CHAPEL HILL, N.C. – An estimated 1.3 million people in the United States suffer from rheumatoid arthritis. The causes behind this chronic disease — which can exhibit itself as pain, swelling, stiffness, deformation, and loss of function in the joints — have eluded scientists for centuries. A new study by UNC researchers offers tantalizing glimmers about the roles of a gene called CCR2, an immune system cell called Th17 cell, and a missing monocyte. The study contributes to a better understanding of the disease mechanism and has implications to guide the clinical trial strategy, said lead researcher Peng Liu, MD, PhD, research assistant professor at the UNC Thurston Arthritis Research Center. Her team’s findings were reported online in PLoS One on Oct. 4. The mystery began several years ago when arthritis researchers zeroed in on a gene called CCR2. CCR2 is highly expressed in the joints of patients with rheumatoid arthritis, which led researchers to believe it might contribute to the disease. “Scientists thought that if you inhibited CCR2 you would have a beneficial effect,” said Liu. “But actually, the result was the opposite.” Studies revealed that suppressing CCR2 in fact cannot ameliorate joint inflammation, in some cases, it leads to disease exacerbation.Intrigued, Liu and her team used mice to investigate how CCR2 affects immune system cells. The immune system is critical because rheumatoid arthritis is an autoimmune disease, in which the immune system attacks the body’s own tissues, causing inflammation. They found the smoking gun when they looked at a type of immune cell known as Th17 cell. Arthritic mice without the CCR2 gene produced three times the amount of Th17 cells, increasing the inflammation in their joints. “We found that an enhanced Th17 cell response is responsible, at least in part, for the increased disease severity,” said Liu. Inhibiting the activities of Th17 cell, therefore, may be a promising new direction for drug treatments for rheumatoid arthritis. The team also found that a particular type of monocyte (a type of white blood cell) disappeared from certain tissues in the mice without CCR2. They hypothesize that the CCR2-expressing monocyte plays an important regulatory role, so without the monocyte, Th17 cells proliferate. “The potential link between CCR2 and the Th17 cells is the monocyte subset,” said Liu.“This subset of monocytes may have a suppressive function in autoimmune disease,” said Liu. The finding opens the door to new treatment possibilities, such as injecting this monocyte subset into patients with rheumatoid arthritis: “Finding this monocyte may be important for later development of cell-based therapy,” said Liu. Other collaborators from the UNC Thurston Arthritis Research Center include Teresa Tarrant, MD, Alan Fong, PhD, Rishi Rampersad, Christopher Vallanat, Tatiana Quintero-Matthews and Michael Weeks. Additional collaborators include Denise Esserman, PhD, from the UNC Department of Medicine and UNC Department of Biostatistics, Jennifer Clark of the UNC Department of Biostatistics and Franco Di Padova, MD and Dhavalkumar Patel, MD, PhD of the Novartis Institutes for Biomedical Research, Switzerland. For a report of the research, see: http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0025833. Support for the research comes from the North Carolina Translational and Clinical Science (NC TraCS) Institute, home of the UNC-Chapel Hill Clinical and Translational Science Award (CTSA); the Arthritis Foundation; and the National Heart Lung and Blood Institute.

move to improve

Today is World Arthritis Day, and this year’s theme is one I definitely need to take to heart: move to improve. I know that’s advice I need to take to heart. I work at a computer most of the day, but I’ve been trying to incorporate getting up and moving—even if it’s just for a quick walk around the office—into my days.

Still, I can do much better. I need to get back in the habit of working out again and not let my insane schedule talk me out of being healthy. But here’s what my good friend and yours HHS Secretary Katherine Sebelius had to say about World Arthritis Day:

Today is World Arthritis Day, a perfect time to get the word out to friends and loved ones about some of the simple steps that you can take to prevent and manage arthritis. Almost all of us know someone dealing with arthritis. Today, one in five adults suffers from the condition. Each year, it leads to more than 40 million outpatient visits and roughly one million hospitalizations.

Beyond the painful human costs, the disease also carries a high economic price tag: $128 billion annually in medical expenses, lost earnings and reduced productivity. The good news is that arthritis is not inevitable or untreatable. For osteoarthritis, the most common type of arthritis, prevention is possible. Relief is available for many forms of the disease. And more promising treatments are on the horizon.

The theme of this year’s World Arthritis Day is “Move to Improve”. That is because one of the best things you can do to manage arthritis is to simply get moving. Physical activity is good for your body. It decreases pain, improves function, and delays disability. Even a small amount of extra activity around the home can make a big difference for your health.

That’s why we in the Obama Administration are supporting community efforts across the country to promote active lifestyles. And it’s why as part of the Affordable Care Act we made a historic investment in preventive care for seniors.

To learn more about new benefits for people dealing with arthritis, visit Healthcare.gov. And for tips on what you can do to prevent arthritis and how you can get involved in finding ways to conquer the disease, visit http://www.cdc.gov/arthritis.

Together, we can reduce the pain and suffering that arthritis causes for millions of Americans every day.

This couldn’t come at a better time. A recent National Psoriasis Foundation surveyfound one in four people with psoriasis may have undiagnosed psoriatic arthritis. That is insane. If you have psoriasis—heck, even if you don’t—

and you have the following symptoms, please get checked out by your doctor:

• Pain, swelling or stiffness in one or more joints;

• Joints that are red or hot to the touch;

• Frequent joint tenderness or stiffness;

• Sausage-like swelling in one or more fingers or toes;

• Pain in and around the feet and ankles;

• Changes to the nails, such as pitting or separation from the nail bed;

• Pain in the lower back, above the tailbone.

a victory—with pockets

I ordered myself a sewing machine (a Brother CS-6000i) as an early birthday present. It came in the mail a few weeks ago, and I love it. My first project—what else? A tablecloth for my (teensy) sewing table—was a bit of a disaster, with terrifically crooked seams. I did, however, learn some lessons that I applied to my next project: a skirt tutorial found on Pinterest.

It took me all last weekend. I ripped apart many a seam until they were all straight as arrows. Still, it’s not perfect, but I absolutely adore it. It even has pockets, people! (Pockets are crucial in my line of work.) And, better yet, it has an elastic waist but doesn’t look frumpy. Since my hands have been giving me trouble lately, a cute skirt with no buttons or zippers to fumble with is just what the doctor ordered.

Plus, I love that I have a hobby that I can do even when I’m not feeling great. With jewelry making, it my hands are sore and thick, it’s hard to manipulate tiny beads and thin wire. But, I can push a yard of fabric under the needle even with club hands. So, hooray!

medical jargon: studies show anti-TNF drugs don’t raise cancer risk

There was an interesting Arthritis Today Magazine article sent to me by the Arthritis Foundation not too long ago: Several studies have found there is not statistically significant cancer risk for those who take anti-TNF medications, like Enbrel or Remicade.

This could be a big deal; even though I take a TNF-blocker (hello, Enbrel) and I’ve been on several others in the past (hi there, Humira and Remicade and Orencia) because they’re the only things I’ve found so far that make my psoriatic arthritis manageable, I was and remain aware of the potential for an increased risk of cancer. I imagine all of us on these types of drugs have that knowledge in the back of our minds, and I’m certainly aware of people who decided not to take these drugs because of that risk. It’s a choice only each of us can make.

But, perhaps, this will put some minds at ease and allow more people to get on these treatments—if that’s what they want. I know they’ve helped me, and I wouldn’t be able to do everything I do without Enbrel, as I found out last year when I went off it for just six months and quickly found myself in one of the worst flares I’ve ever experienced. So, despite the risks, I’ll take my weekly injection; even so, this will let my mind rest a bit easier.

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.

i love ‘running with scissors’

Running with Scissors (memoir)

Image via Wikipedia

The Professor and I headed out to local big box bookstore today to spend the gift card that was sort of an early birthday present for me. (It’s complicated.) The book I planned on buying—”Extremely Loud and Incredibly Close” by Jonathan Safran Foer—was not available at my local big box bookstore, so I whipped out my trusty iPhone and looked for authors similar to him (and, incidentally, Kurt Vonnegut).

And I’m super glad I did.

One of the first hits was for Augusten Burroughs‘ memoir “Running With Scissors.” I’m not very far in, as I’m in the midst of typing up meeting tape and then writing an article on said meeting, but I’m loving it so far. Why am I telling you this? Imagine my surprise when, on page 12, there’s a mention of psoriasis. No, really:

My father was otherwise occupied in his role of highly functioning alcoholic professor of mathematics at the University of Massachusetts. He had psoriasis that covered his entire body and gave him the appearance of a dried mackerel that could stand upright and wear tweed. (Burroughs, p. 12-13)

While not exactly the kindest description of someone with psoriasis, I have to admit that certainly conjures up a vivid image—and one that’s not entirely unrealistic.

Just a few paragraphs later, we learn Dad has arthritis, and—though it’s not explicitly stated—it’s likely he has psoriatic arthritis.

My father had a bad knee. Arthritis caused it to swell, so he would have to go to his doctor and have it drained. He limped and wore a constant pained expression on his face. ‘I with I could just sit in a wheelchair,’ he used to say. ‘It would be so much easier to get around.’

Dad may not be the best representative of us chronically ill, but it’s better than nothing. And, since it’s a memoir, it’s not like Burroughs can change his dad. Regardless, it was nice to see someone with psoriasis and (psoriatic) arthritis in the popular media. So, kudos to you, Augusten Burroughs. And thanks.

i’m just a little unwell

I’m in the midst of one of those flares where it seems I can feel the joint destruction. The pain is just a little more intense, a little more malicious. It’s hard to describe, but it’s as if my psoriatic arthritis has decided to kick things up a notch.

Maybe it’s silly to see my arthritis as some kind of creature–and one that’s often malevolent, at that–but during this type of flare, that’s exactly how it seems to me. Joints that normally don’t hurt, not really, are grinding and sending out horrible, grabby tendrils of pain shooting up my limbs, tightening already knotty shoulders.

If it stays like this much longer, I’ll have to get in touch with my NP. I hope it will pass, though, with a little relaxation. Fortunately, that’s exactly what I have in mind for this long weekend: lots of reading and resting, with some NordicTrack and vegan cooking thrown in for good measure. I’m feeling better just thinking about it.