Glass flakes in injectable MTX; drug recalled

Oct. 28, 2010 — Glass flakes have led to the recall of Sandoz and Parenta brand injectable methotrexate, a drug used to treat rheumatoid arthritis, cancer, and psoriasis.

The glass flakes “are the result of delamination of the glass used to manufacture the vials” of two dosages of the drug, the FDA says in a news release.

“There is the potential to develop adverse reactions in areas where the particles lodge,” the FDA says. “Injection of drug from the affected lots could lead to serious adverse events, resulting in disability and death. Additionally, neurologic damage could result from intrathecal [spinal] administration.”

For more information, click HERE.

Hasta la vista, 53…

My (erk) 54th birthday has come and gone. Monday (the actual day) wasn’t a very good day for a birthday celebration, so my Mom, Mr Wren, Cary and Matt and I went to a local Mexican restaurant last night for a tasty meal to celebrate my personal new year. I devoured several big tiger prawns with a delicious mango-chipotle sauce with Mexican rice and beans on the side. I enjoyed every single bite.

When the plates were cleared,  six handsome Latino waiters arrived at our table bearing a beautiful chocolate cake with candles (one for each decade! Erk, again!). And then, to my surprise and considerable embarrassment, a gigantic sombrero was plopped on my head and they sang Happy Birthday Conchita to me, complete with guitar and maracas. One of them snapped a picture, and as we finished eating the cake, I was presented with a card from the restaurant with my picture inside it.

Oh, my. I’ve never worn a sombrero before. Perhaps this is why…

In other news, I got in touch with my rheumatologist’s office and have an appointment for cortisone injections for the bursitis in my hips. It’s not until Nov. 6, but I’ll take it. The secretary offered to get me in to see a different rheumatologist sooner, but explained that if I took that appointment, the VA would switch me over to that new rheumy for good. I like my current doctor, so I decided to wait. I can grin and bear these aggravating hips for another week and a half. That they were able to get me in to see him before my regular appointment in December was gift enough.

At any rate, I’m looking forward to the appointment with a mixture of apprehension and impatience. Do I have the heeby-jeebies? Yes. Do I want this pain to go away? Yes. There’s always a price…

Here’s hoping that everyone is feeling good and enjoying the change in seasons.

 

 

Relativity, Part 2

Lene Andersen, the writer of the excellent blog, The Seated View, and a columnist for MyRACentral, has a wonderful post up today describing the many different kinds of pain. Lene has had rheumatoid arthritis since she was a child, and as an adult, contracted fibromyalgia as well. This is a writer who knows her subject well. Do go read her post, “Like Snow,” when you have a few minutes free.

In the comments on that post, I respectfully added yet another description of pain, one that describes best how an intense flare feels to me:

“The Butter Knife. Imagine a butter knife wedged between the joints of your knee, or perhaps your great toe. Now, imagine someone flexing it up and down, forcing the joints apart just a little, then back, over and over again in time with your heartbeat. This pain, which is a combination of sharp and deep, can last for 15 minutes or 15 hours, and sometimes even longer.”

When I wrote yesterday about RA pain (or any pain, I suppose) being relative and subjective, it was The Butter Knife I was remembering. I haven’t felt it since 2003, when in the middle of a long remission, the rheuma dragon suddenly attacked my left shoulder. At that time, I hadn’t felt The Butter Knife for at least four years.

Desperate, I took the only thing I had on hand for the pain—Aleve—which of course, had no effect whatsoever. Grimly, I resigned myself to hunker down and wait, without the possibility of narcotic painkillers, until the rheuma dragon’s flare let me go.

During the second day of the flare, one of my co-workers suggested that I pop over to the chiropractor’s office next door to our newspaper offices. Maybe the doc could do something about my pain, she said.

Well, I knew he couldn’t cure my RA, and I wasn’t very confident that he could do anything about the pain, but I decided to give it a try. I got lucky; the doc was between patients on a slow day and took me right in. I’d never been to a chiropractor before; I’d heard about the “adjustments,” and considering the intensity of the pain my shoulder was in, I was pretty fearful. There was no way I was going to let him “adjust” anything. At that point, The Butter Knife had been digging at my shoulder joint without pause for about 36 hours; I was fatigued and feeling very, very fragile.

The nice man did no “adjustments.” Instead, he powered up his magic ultrasound machine and sent deep, warm sound-waves through the tight muscles and aching joint and tendons of my shoulder, telling me to relax and enjoy this gentle, quiet comfort. He worked on my shoulder for about 10 minutes, then asked me how it felt.  It’s still pretty sore, I said. He asked me to show him what my range of motion was now.

When I’d walked into his office, I couldn’t move that shoulder at all without gasping. I’d been forced to hold my arm tight against my body, bent at the elbow, with my closed fist at about neck level. In that position, The Butter Knife still flexed and dug with my heartbeat, but it was just about bearable. If I moved my arm, though, the whole joint jolted into sparkling agony.

As a result, since the flare had started so suddenly the day before, I was functioning one-handed. My pain-tolerance-level, which had been pretty high back in the bad old days, was now reset at “normal,” so I was pretty miserable. So this guy thought ten minutes with a woo-woo machine and I’d be all better? Yeah, right.

I figured I’d humor him, though. Gingerly, I moved my arm from the tight-to-the-chest position. To my utter astonishment, I was able to straighten out my arm, allowing my hand to drop to thigh level. It still hurt, but it wasn’t that stabbing, overwhelming, intensely throbbing pain anymore. When he saw my face, my chiropractor friend grinned and said he’d work on me with the ultrasound for a while longer.

When I left his office 20 minutes later I had about 70 percent ROM back in my shoulder, and my pain level had gone from a screaming eight to a dull, throbbing four. I was deeply relieved. And the flare didn’t re-intensify later. Instead, by the following morning, it was gone and my shoulder was back to normal.

Of course, when I got his bill the following week, I was astonished again. The half-hour ultrasound treatment was $120. I had no idea what chiropractic treatment was supposed to cost, but it seemed like a lot. But I was grateful for the chiropractor’s help in relieving my RA pain, so I winced and mailed him a check.

While it was nice to know that I now had a non-opiate drug option available to relieve some of my pain if I had a really bad flare again, I also knew I wouldn’t be able to afford the friendly chiropractor and his ultrasound machine very often. (At the time, my medical insurance wouldn’t cover chiropractic, and small-town newspaper editors are far from rich.) If my rheuma was back and ramping up again, I’d be in that sort of pain almost daily.

The very idea depressed me. I’d have to go to my primary care doc, get a referral to a rheumatologist, and start taking those nasty, nauseating, useless and dangerous drugs again. It was something I really, really didn’t want to do.

Why? Because for all those years when my RA was bad, not a single NSAID or DMARD I’d taken had any effect at all on my rheuma. I took and tested one after another after another, but my disease remained just as severe and active, attacking various joints once or twice a week in transitory flares that lasted from four to 72 hours. Some were intensely painful; others I could handle, managing to work and do other things while I was hurting, though I was often disabled to some degree by the pain. After six years of frustration and dashed hopes, I’d finally stopped seeing a doctor for the rheuma at all. I stopped taking everything but ibuprofen and naprosyn, which was by then available over-the-counter as Aleve. I didn’t have much faith in it (as a prescription medication it had been useless for me), but I kept it in my medicine chest just in case.

Fortunately, I didn’t have another Butter Knife flare in my shoulder or in any other joint. My RA remained in remission for two more years. I still had a few very minor flares, but I could handle those easily. I’d take a few doses of ibuprofen or Aleve, the pain would drop back a little and within a few hours, be gone.

The point of this story is that we do all perceive pain differently—even past pain compared to present pain. There are different types and intensities of pain, too. That’s one of the reasons I’ve been reluctant to get steroid shots for the bursitis in my hips (besides the fact that I’m a clucking chicken when it comes to injections in or near painful joints). This hip pain is, to me, moderate. It’s not the dread Butter Knife at work.

It’s The Nag, to use one of Lene’s descriptors. And because the two kinds of pain don’t really compare, I’m almost embarrassed to complain about it.

As I mentioned in my last post, I’m grateful that I’m not having pain like I used to have, even though my RA is no longer in remission. It’s active and, while my rheumatologist feels it’s “under control,” that doesn’t mean that it doesn’t flare or cause me pain. It’s just different, now. And the bursitis, itself probably triggered by my autoimmune RA, is yet another kind of pain. It’s a new one. I’ve experienced nothing I can compare it to. But it’s here, it has become constant, and it’s starting to get worse.

So I’ll add yet another pain description, this one for bursitis of the hips: The Dive. You know how when you swim in the deep end of a pool, and holding your breath, you dive underwater to the bottom? Pressure builds up in your ears, making your head feel sort of  like it’s clamped in a vice. It’s not too tight, but it’s unmistakable and un-ignorable. That’s The Dive pain in my hips. At night, laying down and trying to sleep, I go deeper “underwater” than I do during the day, so the painful pressure gets worse, becoming a constant, dull, ugly ache that disturbs my sleep and has me wishing it would go away, all night long.

The Butter Knife. The Nag. The Dive. How would you describe your RA/fibromyalgia pain?

Relativity

Pain is relative. Or maybe it’s subjective, I don’t know. It occurred to me when I got up this morning after another long, wakeful night thanks to my aching hips, that while this pain is pretty unpleasant, I’m grateful that it isn’t worse.

Because I do know worse.

Rheumatoid arthritis keeps my hands and, sometimes, wrists in a constant state of mild to moderate pain. They’re always in flare—the joints and the tissues around them inflamed and at times swollen. It’s completely endurable, and slowly, I’m learning to adjust the way I use my hands to compensate for the pain and disability as I go about trying to live my life as normally as possible.

For the last several weeks, my hips have also been a problem, though that pain is more transitory. Some of it is caused by rheuma—indentified by pain in the groin area of the hipbones—but that occurs only in the right hip, and it comes and goes without warning or reason. The other hip pain—which is on the outside of my hips over the joints—is caused by bursitis. Yet that pain is also strangely transitory. During the day, I feel it as an odd, twingy “looseness” in the joints along with an occasional dull ache. But at night, the bursitis pain becomes constant, the ache becoming deeper and more frustrating as the night passes and I wake up, groaning, to turn from my right side to my left (and vice versa), then to my back, again and again in a mostly futile effort to ease it.

I’ve decided to take the good advice I’ve been offered by so many of you. Tomorrow morning I’m calling my rheumatologist to ask for corticosteroid injections in the hope of easing the bursitis pain in my hips, which is worsening instead of going away like I’d hoped. I’m still a bit apprehensive about it, but I realize it’s a childish fear. The shots might hurt for a moment, but from what I’ve been told, they’ll probably stop the bursitis pain for a while. I’ll just put my big girl panties on and do it.

The reason I call this current pain relative, though, is that I’ve lived through so much worse in the past. In the late 80s and through half of the 90s, I suffered with terrible flares that often disabled me. I can remember climbing the five flights of stairs to my flat in Germany one riser at a time, clutching the banister and using it to pull myself up, pausing at the landings to build up courage for the next climb, my foot or knee or hip so painful that even the slightest movement or pressure was enough to bring tears to my eyes. I remember the many times I stood at the back of a long line at the commissary after work, waiting to get to the checkout counter with my cart of groceries, putting my weight on my good foot, the pain so huge, so overwhelming I wanted to scream. But I didn’t. I just sucked it up and tried to distract myself by thinking about the deep, hot bath I’d soak in and the lovely narcotic painkiller I’d take as soon as I got home.

I remember a night when both hands were so badly flared that I couldn’t get the door to my bedroom open so I could use the bathroom. I stood at the door in the dark and wept, trying to figure out how to push the door lever down and somehow pull it open when any movement or pressure on my hands meant flashing agony so intense it nauseated me. I didn’t even let myself think about how I’d manage to use the toilet. I’d deal with that when I got to it. And I did.

Somehow, I got through those mind-numbing rheuma flares. They were frequent, but I managed. I walked my dog, cussing under my breath. I carted laundry up and down those stairs (and an additional flight down to the basement) every week, quietly turning the air blue. I limped my way through hikes along with soldiers, interviewing them and taking photos during combat exercises. I skied the Alps in spite of a nasty flare in my right foot, drove my car to work in spite of intense shoulder or hand pain, and gimped to the city bus stop when driving was just too dangerous to attempt. I did it because I had to. I had a job, a family, a life I wasn’t willing to stop living.

Back then the only medications available to me were NSAIDs, plaquenil and gold salts. None of them had any effect on my rheuma, and believe me, I took them all. The only drugs that worked were narcotic analgesics. My doctor would only prescribe 10 tablets at a time, and those only if I dragged myself to his office at the military hospital to see him. He was, of course, fearful of addicting me, but I wasn’t worried about that at all. It was a price I was willing to pay in order to get relief, even if it was temporary, from the awful, disabling pain I lived with. And it frustrated and angered me that he was so stingy with them, even as I understood his caution.

The pain I cope with today is nothing like that, though there are moments when it feels like it’s moving in that direction. Still, I’m intensely grateful for the difference. I have to believe that my current cocktail of DMARDs is holding the rheuma in check; that it would likely be far worse without them. Hard to know for sure, of course, without stopping the meds. I won’t do that. I really don’t want to know.

The autumn rainstorms are here. Perhaps they’re part of the reason I’m so sore today. I’ve been pretty lucky during the last year or so, as the pain from the rheuma and the bursitis has been mostly bearable and it hasn’t really slowed me down very much. Not like it used to. But I had to ask Mr. Wren to cart wood in so I could build a fire in the stove; the prospect of doing it myself with such sore hips and hands made me cringe. I don’t like having to ask others to do things that I’d normally be able to do for myself. But once again, I’m learning.

The fire is blazing now, its cozy warmth comforting. I’m going to make a pot of hearty soup today (with help, I think) and spend the rest of the day doing all I can to rest and be comfortable as I enjoy the drumming of the rain on the roof and the moan of wind in the eaves. And I’m holding out hope for the corticosteroid shots, whenever they come. The rheuma … well, we’ll see.

Thanks for listening. I hope you’re all feeling well and enjoying the weekend.

 

Sweet transition

Autumn had a couple of false starts here at the Wren’s Nest in the Northern California Sierras. We had a pleasant, cool week; an unbelievably hot week; and then, an in-between one. But tonight the first of a series of storms has blown in, ushering in the last week of October. With them comes colder, wetter weather than we’ve seen here since April.

Just as I expected.

The last week of October, for as long as I can remember, has always been the transition week between summer and true autumn. It’s the week I build the first, fragrant woodstove fire to take the damp chill out of the house. It’s a cozy fire, warm and gentle, the perfect foil to an afternoon spent raking up leaves while late flocks of Canada geese V by overhead, honking their goodbyes.

It’s the week of my birthday and of Hallowe’en, which was always my favorite holiday as a child. I loved dressing up as a vampire, witch or ghost and joining the small crowd of neighbor-kids after night fell to visit house after house, knocking on doors and ringing doorbells, then yelling “trick 0r treat” when they opened. The suitably frightened residents dropped big handfuls of candy into our open brown grocery sacks, choosing treats over tricks every time. It was delicious fun, the one night a year I was allowed to be out after dark without my parents, running and laughing and shivering in my costume, which was always too thin for the sharp, late-October cold. Wear a coat? No way!

Later, I got to help my little daughter dress up in her costume and make-up for Hallowe’en, but times had changed. She never got to go without me in tow, standing out on the sidewalk as she knocked doors and had her bag filled with goodies, but she still had a great time. And of course, like I did, she gobbled up all that candy, forbidden every other time of year, within a few days.

Today, while I have a bowl of candy ready,  hoping that small crowds of pirates, vampires and wookies will rap on my door on Hallowe’en night, they rarely do. Instead, I guess their parents take them to harvest festivals at their schools and churches. That thrilling, wild night of play and treats, cold noses and pumpkins on doorsteps seems to be a relic of the past. I miss it.

It started raining a little while ago. I was unsurprised. Of course, I’d seen the weather forecast, so I knew it was coming, but along with that, my joints have been twinging like crazy all day. A rheuma flare is in my stars. Both my hands hurt when I move the joints or touch them. My right knee stabs as I walk. And both hips ache with a combination of rheuma and bursitis.

I’m in good spirits, though. I’m listening to the rain as it drums the roof and trickles in the gutters. I’ve got my window cracked so I can smell it and feel the crisp snap in the air, even as I wrap up in my thick, warm robe and quilt. On Monday I’ll be another year older, but that little girl who loved Hallowe’en is still right here, enjoying the season and the gifts it brings.

 

Sunday’s gift

For the Sake of a Single Poem

For the sake of a single poem, you must see many cities, many people and Things, you must understand animals, must feel how birds fly, and know the gesture which small flowers make when they open in the morning.

 

Rainer Maria Rilke

 

You must have memories of many nights of love, each one different from all the others, memories of women screaming in labor, and of light, pale, sleeping girls who have just given birth and are closing again. But you must also have been beside the dying, must have sat beside the dead in the room with the open windows and the scattered noises.

And it is not yet enough to have memories. You must be able to forget them when they are many, and you must have the immense patience to wait until they return. For the memories themselves are not important. Only when they have changed into our very blood, into glance and gesture, and are nameless, no longer to be distinguished from ourselves, only then can it happen that in some very rare hour the first word of a poem arises in their midst and goes forth from them.

-Rainer Maria Rilke, The Notebooks of Malte Laurids Brigge

Waiting for words

I’ve been quiet lately. You may have noticed.

My quietness has not been because of problems. We all have those, and mine are no more or less important or serious or frivolous than yours. Instead, I haven’t blogged because I haven’t felt I had anything useful to say.

Strange, that. I’ve left comments of encouragement and compassion, humor and kindness, on other blogs, but haven’t felt compelled to expand on any of those comments here. It’s all been said already, hasn’t it?

My life is full of mundane, everyday moments. I wake up early in the morning, groaning softly with frustration and yes, pain, as I turn over for the hundredth time since slipping into bed the night before, trying to ease the low ache in my hips. I’m wide awake, wishing I could relax and be comfortable, enjoy the dim, peaceful, dawn quiet, but that’s just not going to happen. My body is yelling at me. I get up. My first steps are stilted and stiff. My legs and ankles aren’t quite ready for smooth movement. But they eventually decide to cooperate. I put my physical being out of my mind.

A little later I’m filling the water jug from the sink, preparing to make coffee. I turn off the tap, lift the jug and yelp as the joints in my right wrist and hand protest at the weight. Quickly, I add my other hand to the effort, taking the jug in both hands rather than just one. Two-handed, I pour the fresh water into my electric kettle and flip the switch to start heating it, shaking my head at myself. When will using both hands to do the job of one become a thoughtless, automatic habit? Soon, I hope.

Later still, I’m taking my dog, Finny McCool, out on his morning constitutional. He trots along, ears flapping, tail up, wiry fur tousled and goofy and sticking up all over, his nose busy with the new smells of the day. Just watching him makes me grin. And then, with no warning, a hot spike stabs my right knee, causing me to catch my breath and stagger for a second. Yeow! Oh, no! Another step, another spike … and then it’s gone.  I walk on, glad for the reprieve, but now my good mood has been modified. It’s not gone, but I’m wary. Rheumatoid arthritis, even when it’s not causing active pain and disability, never allows me to forget it’s there, waiting in the wings to surprise me. To slow me down. To remind me that I’m mortal.

My mom will be 79 next month. She’s very active and incredibly healthy, but she strained a muscle in her back last Sunday evening as she took her chest of good silver down from a cupboard, preparing to set the table for a family get-together. She didn’t say much about it, but it was clear that moving around hurt her. So rather than going home, I stayed with her this week, taking her to the doctor, plying her with heating pads and ice packs, offering doses of ibuprofen, making meals, and keeping her company as we waited for the hurt muscle to calm down and heal. We did a lot of talking and laughing, reminiscing about times past, about my late father, about the state of the world today. It was a good, gentle time. It felt good to be the caregiver for a change, to attend to her needs and return a little of the love and compassion she’s given me so much of throughout my life.

Sometimes I need reminding to move outside of myself, to stop paying so much attention to my own troubles. Life is good. I’m strong. Walking in peace and in beauty is my job today – and every day.

I’ve waited for words. I’m glad.