Blame it on spring.

Well, yep, I decided to change Rheumablog’s look again.

I’m blaming it on spring. You know how it is: You just have to toss out the same ol’-same ol’ and try something new. Do some spring-cleaning. Knock down the cobwebs. Out with the old, in with the… well. You catch my drift.

The blog’s pinkish-cartoony-artsy look (the one before last) was nice, but it quickly started looking too cutesy to me. Every time I opened the page, I had to suppress a shudder. So I changed it to that rather serious, dark red theme a week or so ago. It was nice, but dull. So here’s the newest look. I do believe I like it.

But it’s spring. Don’t be surprised if I change my mind.

I just completed a second week-long prednisone dose-pak, hoping once again to demolish the damned hip bursitis once and for all. It didn’t. But there is good news. Several days after the that first round of prednisone, the returned pain started ebbing some. By the time I started the second dose-pak last Saturday, it was down to about half– roughly a four on the 0-10 pain scale.

Now, that’s something to celebrate! My bursitis pain remains at about half what it was a month ago. I hope that this last dose-pak, like the first, will also pack a delayed punch. Maybe the pain will drop a bit further down the scale.

Stranger things have happened.

I’m doing fairly well RA-wise, too. I have occasional twinges and mini-flares, but it seems mostly under control and the meds seem to be working as well as they’re going to. I’m good with it.

In other news, it looks like I’m going to be helping my aunt take care of my uncle three days a week. Uncle J is 80. He’s mostly blind and was partially disabled by a stroke several years ago, and it’s getting harder and harder for Aunt P to do it by herself. I’ll be cooking meals for both of them, taking Uncle J to medical appointments, handling a little light housework, and basically allowing Aunt P to get some much needed rest. She’s had to neglect her own health over the last couple of months, she’s been so busy with him, so this will give her some time for that, too.

It’s odd, the twists and turns life takes. While I’ve always known that one day, my Mom might fall ill and need me, I never expected that she’d need me for as long as she has. And likewise, I never expected that my favorite aunt and uncle would also need my help when they grew elderly. Being unemployed for so long has been hard in many ways. As the managing editor of a newspaper, I was accustomed to being in charge. I loved working with my reporters to hone and punch up stories and I loved putting the paper together each week from start to finish. I loved being busy. I work well under pressure. I loved being needed.

Mom is doing very well these days. Aside from the occasional gentle reminder about taking her meds and keeping herself hydrated, she doesn’t really need me anymore. But Aunt P and Uncle J do. They hold a very dear place in my childhood memories, so I’m pleased that I have the time and the ability to help them. To return some of the love they showed me when I was a child.

One more big news item: I’ve dropped 14 pounds! I’ve just 36 more to go to reach my fighting weight. I wonder if permanently lightening the load on my hips, knees, ankles and feet will have any real effect on the RA? My fingers are crossed.

Happy Easter, everyone!

RA may prevent dementia?

I have great news!

Did you know that rheumatoid arthritis may be protecting us from getting Alzheimer’s?

Yep, it’s true. Or at least, it may be. Now, I’m a little late in discovering this news: The Journal of Alzheimer’s Disease actually published the study that discovered this possibility back in January. According to a story in the Los Angeles Times about it, “A signaling protein called GM-CSF that is released when people have arthritis may stimulate the body to attack and remove amyloid deposits in the brain.”

Beta amyloid deposits (or plaques) are the hallmark characteristic of Alzheimer’s.

Of course, in real life, no one would want to get rheumatoid arthritis simply to avoid Alzheimer’s Disease later in life—at least, I don’t think they would. I surely wouldn’t. But what’s so great about this news is that if scientists can isolate this protein and confirm that it actually does do what they think it does, then they may be able to reproduce it synthetically and give it to people to help guard against the horrors of Alzheimer’s. They might also be able to figure out how the bodies of those of us who have RA go about producing this particular protein—and perhaps find a way to block its out-of-control inflammatory effect.

I love science and scientists, don’t you? I mean, look how far they’ve come in combating RA. When I was first diagnosed in the late 1980s, very few Disease Modifying Anti-Rheumatic Drugs (DMARDs) were available. There were gold salts, plaquenil and methotrexate; if there were others, I’ve not heard of them. At that time, scientists had only recently discovered that MTX, which is actually a cancer drug, could sometimes slow the progress of rheumatoid arthritis in some people. Plaquenil is actually an old anti-malarial drug; it had been in use for many years for RA, with mixed success. And gold, as an anti-rheumatic, is older still. It’s rarely used anymore and doesn’t work particularly well. I was given plaquenil and oral gold; neither had any effect on my severe RA at the time. I wasn’t offered methotrexate; I think that it was new enough in the late 80s that it hadn’t been added to the U.S. military medical system’s formulary yet (my medical care at the time was being provided by the U.S. Army).

Non-steroidal Anti-inflammatory Drugs (NSAIDs) were the go-to fix for RA back then. I took many different ones: ibuprofen, naproxen, Clinoril, Feldene, Indocin… all to absolutely no effect. Believe me, I was truly discouraged. And, even though my doctor told me that my RA was incurable, I couldn’t believe that none of these drugs did me any good. In fact, the only drugs that did help were narcotic painkillers—and I was allowed only limited doses of those. For many years I deeply resented that. I was more than prepared to become addicted to them as long as they’d take away that awful, awful pain.

But now there are many more DMARDs to choose from, some of them quite effective for many people. They’re the first line drugs to battle newly diagnosed RA now, chosen before NSAIDs. And today we have biologics, too. These drugs are miraculous, targeting specific enzymes and proteins in our bodies that cause inflammation. When they work (and unfortunately, like other drugs for RA, they don’t work for everyone) they work very well, reducing RA symptoms and pain dramatically.

I’m grateful that I’m living in a time when human knowledge is so much more advanced than it used to be. I’m grateful that should my RA get suddenly worse, outwitting the three DMARDs that are currently keeping it manageable, I have the option of taking a biologic medication.

All of these drugs can be risky. NSAIDs can cause stomach ulcers and damage the liver. DMARDs and biologics suppress the immune system. DMARDs may also cause life-threatening liver damage, and biologics may increase the taker’s chances of developing severe, life-threatening infections or even cancer.

Taking drugs like these can be scary. They’re risky. But if taking them can decrease my RA pain and disability and can slow the progression of the disease, then they’re worth the risk, in my opinion.

I’d never choose to have RA in order to avoid Alzheimer’s, and I’d surely not wish either affliction on anyone. But thank goodness for scientists, their curiosity and their perseverance. Perhaps someday they’ll be able to cure, or better yet, prevent Alzheimer’s and rheumatoid arthritis.

In the meantime, I’m glad that my RA may keep me from losing my mind. Whodathunkit?

The good bad news

Here’s the Good News: Since I’m still at my Mom’s townhouse taking care of her, and she has a nice deep bathtub upstairs in the master bathroom, in a few minutes I’m heading up there to soak for a while in some deliciously hot water. With bubbles!

The Not-So-Good News: I wanted, so much, to be able to write here: “The prednisone taper worked. The pain is gone.” But it’s not, so I can’t.

It sure tried, though. Three times during the six-day taper, for stretches of five or six hours each time, the bursitis pain vanished. And not only that: The ugly, low-level rheuma pain in my hands, pain that’s been my unwanted, day-into-night-into-day companion for more than a year now disappeared too.

Believe me, I relished the freedom it gave me. It feltfabulous to walk smoothly and without saying “ow, ow, ow” under my breath because of the bursitis pain. It was lovely to be able to chop up raw vegetables for a salad without wincing, and I loved being able to sweep the leaves off Mom’s patio and deck, then pick up the big piles and put them in the yard waste can without even a little bit of pain. That hour or so of light exercise lifted my mood and made me feel both useful and youthful. That’s worth a lot.

Of course, nothing else changed in any big way. The days went on just as they always do, with the same routines, the same chores, the same small joys and disappointments. The first three nights I slept very poorly in spite of taking the new prescription of nortriptylene; I’m guessing that the prednisone’s insomnia-side effect was stronger than the stuff could overcome. But the fourth and fifth nights? In spite of some moderate hip pain I snoozed like the proverbial baby. I cannot tell you how good it felt to wake in the morning without a play-by-play memory of the silent, desolate hours between 1 and 5 a.m. I’m hoping for the same restful sleep tonight.

On another bright note, I was pleased to find that the prednisone (at least in this quick taper and limited milligramage) didn’t affect my appetite, so I was able to stick to my diet easily. And I didn’t “grow teeth,” my words for becoming snappish and irritable.

But as I write this on Saturday night, the pain is back. All of it.

I took the last, single 4 mg. tablet early this morning. Until around 2 p.m., the bursitis pain was there, but barely. Then it started ramping up, first in the left hip, then the right. This evening, my hands have joined the malevalent chorus with a sort of sniggering glee. But I’m not terribly upset. Really. That this prednisone taper worked at all means that the bursitis is treatable and might even be curable. It means that maybe this particular taper just wasn’t long enough or strong enough, that it simply needed more time and more muscle to whack the inflammation hard enough to keep it whacked for good.

I see my rheumatologist again the first Saturday in May. In the meantime, I still have a few more physical therapy appointments, and I’m continuing with the stretching exercises, the TENS treatments, the icing and the heat. I’m counting my blessings: While being without a job isn’t so wonderful, the fact that I’ve enough free time to take real care of myself is. I’m very lucky that have an empathetic doctor who really wants to help me feel better. Ditto my sweet physical terrorist Joe. And I’ve got you, my friends, offering me your encouragement, your hope and advice, and your genuine care and concern. If that’s not blessed, I don’t know what is.

Here’s wishing all of you a soft and friendly Sunday, free from pain and filled with calm and comfort. And a bubble bath, if one suits your fancy.

Hippy news

Wow! The prednisone taper I’m taking has, literally, halved the pain in my left hip (the worst) and made my right hip pain-free, at least temporarily. I say that because, for most of the second day of the taper (yesterday), that’s how my hips felt. I was extremely happy. I haven’t walked without pain for months and without a limp for weeks and weeks.

By late afternoon, though, the bursitis pain in my left hip started ramping up again. By bedtime, both hips were back to “normal:” Aching, with the left shooting sharp, burny twinges down the outside back of my thigh to my knee. Phooey.

But, this morning both hips felt better. They stayed better (though not as better as yesterday) most of the day. Tonight, they hurt, but not nearly as much as last night. This is a Good Thing.

On a taper as short as this one (six days), the dreaded prednisone weight gain, moon-face and hump side-effects hardly have time to get started, thank goodness. And although I remember feeling distinctly odd and irritable on that taper so many years ago for the poison oak, this time I’ve not felt anything except better. So far.

I’m smiling, believe me. And I’m hoping… hoping. I have three more days on this taper, so maybe the continued, dwindling dosage of inflammation-quelling prednisone will convince my overactive immune system to lay off my hip bursae. I’d absolutely love to move on.

Once again, thank you all for your empathy and encouragement. It’s terrific to feel so supported and embraced by such caring friends.

I’ve joined the club

The Prednisone Taper Club, I mean.

What? There’s no club? Sure there is. I read posts by RA bloggers all the time about the stuff. Seems like just about everyone who’s had any form of autoimmune arthritis or disease for more than a few years has at least tried it.

And if it’s not the taper they’re writing about, it’s about the love-hate relationship they have with prednisone. They write about how well it lessens or alleviates their rheuma pain—even as they curse the stuff for its several nasty side effects: increased appetite, which leads to often substantial weight gain; a “moon” face and a build-up of fat into a hump right behind the neck.

Yuck.

But I have taken a prednisone taper. It was to clear up an incredibly intractable case of poison oak on my calf, and it worked. I was, as you might expect, delighted. I’d been trying to get rid of that horrid, crusty, bloody, weeping rash for five or six weeks without any success. The predisone cleared it up for good in a matter of days.

But prednisone for RA? I’ll be honest. After everything I’ve read about it on the RA blogs, I’d decided I never, ever wanted to take the stuff. I’m already overweight and struggle constantly to keep from gaining even more. Taking a drug that makes me ravenous, even if it can reduce pain, seems like something I’d be better off saying “no” to.

But this hip bursitis and its constant, slowly worsening and now grinding pain has made me willing to consider it. Prior to my Saturday appointment with my rheumatologist, I wrote down all of the kind suggestions my readers made a couple of posts back, when I was complaining about the physiatrist/pain doctor who told me he was stumped. Several of them advised I ask about prednisone. So, as soon as Dr. McA and I were done with greeting one another on Saturday, I unfolded the sheet of paper I’d written my list of questions on.

“You have questions,” he grinned, sitting down. “Hit me.”

Have I mentioned how much I like my rheumy? I discovered that he’d even looked over my chart before he’d walked in; he knew that the other doc had cut me loose. And he knew exactly why I was sitting in his office now. Not RA. Bursitis.

I asked him whether increased inflammation due to increased RA activity might be causing this ugly case of bursitis of mine to be so stubborn. Then I asked him about prednisone. And Neurontin (gabapentin). I asked him about Flexeril (a muscle relaxer)  and Elavil (amiltriptylene).  I asked about taking a new NSAID.

Dr McA looked at my most recent blood test results and said they looked great. My sed rate was just fine. He didn’t think increased RA inflammation/activity was behind the hip bursitis, at least not specifically.  He reminded me that bursitis is often a co-morbidity of RA, though. And then he surprised me. He said that even though the blood tests looked good, he’d order an anti-CCP within my next blood test, since it’s a much more accurate indicator of inflammation than the routine sedimentation rate test. If my inflammation level is up, then we’ll discuss a medication change in response during my follow-up appointment with him in a month. A month! Normally, I have to wait three months between appointments with him. Another surprise.

And they just kept coming. I should say here that I’d gotten so bummed by the physiatrist/pain doc that I didn’t have much hope when I walked into Dr. McA’s office. After all, he’d referred me to him in the first place, saying that the physiatrist could do a much better job than he could on the steroid injections into the bursae. And, since the physiatrist is a physical therapy specialist, and a specialist in pain relief—putting me under his care for this only made sense.

To have that special doc tell me he was stumped as to what else to do about my bursitis, give me a prescription for a drug that doesn’t work well for me anymore and then tell me to run along was demoralizing, to say the least.

But back to the surprises.

Dr. McA thought trying a prednisone taper is certainly worth a try. He prescribed one. And when I told him what a hard time I’ve had sleeping, and asked him for help, he spent some time with me weighing the pros and cons of Neurontin vs. those of amiltriptylene or nortriptylene. The first was originally developed for seizures and the other two are venerable anti-depression meds. But all three work surprisingly well on nerve pain and, as a side effect, cause significant drowsiness. They’re often prescribed as pain relievers. So, in the end, we chose nortriptylene.

And finally, smiling, he said, “You look like you’ve lost some weight. Am I right?”

My jaw dropped. Then  I smiled. A big smile. You know, there’s almost nothing more encouraging and mood-lifting to a woman than having someone notice a weight loss and say so, especially when she’s been dieting and sticking to it religiously. And I have been. I’m ten pounds down, so far. When I told him he assured me that getting lighter on my feet might help relieve the bursitis pain, too. And of course, we already know that getting down to fighting weight will take a heavy load off the joints in my hips, knees, ankles and feet.

This morning I picked up the prednisone taper and the nortriptylene. I started the taper with my lunch. As I write this, an hour or so before dinner, I haven’t noticed any difference in my hip pain, or the mild RA pain in my hands, which also remains more or less constant. But between Joe the physical therapist and my terrific Dr. McA, I have a lot more hope than I did.

I’ve joined the club.

“Sick” vs. chronically ill

Leslie, who writes the blog, “Getting Closer to Myself,” wrote a post today about chronic illness and asking for help. In it, she asks “If you are chronically ill, are you sick, too?”

Leslie has lupus. Recently one of her relatives told her that she didn’t view Leslie as “sick.” To her, people with cancer or mental illnesses qualified as “sick” but Leslie, whose lupus frequently makes her feel perfectly awful, doesn’t. Leslie’s lupus strikes at random, and like most of us who cope with chronic pain and illness, she tries hard to appear perfectly healthy and well even when she’s not.

Dictionary.com defines “sick” as “afflicted with ill health or disease; ailing.” The same website defines “ill” as being “of unsound physical or mental health; unwell; sick…”

Obviously, you can have a chronic illness and have the flu, too, just like you can have a broken leg and a bad cold. But I have never thought of myself as “sick” or “unwell” just because I have rheumatoid arthritis. Certainly, it’s a disease that can make my body unsound and ailing, but those conditions aren’t constant.

Even the hip bursitis I’m dealing with right now doesn’t fit the meaning of “sick,” to me, even though the pain from it is constant. Instead, I think of it, simply, as pain.

Like Leslie’s relative, when I think  of “sick,” I think of someone with the flu or a stomach bug or pneumonia. And, like her, when I think further into the other, various meanings of the word, I think of a pedophile or a murderous madman like Charles Manson. People like that are truly sick. But I don’t think of Leslie and her lupus. I don’t think of myself.

This is not to say that I am not occasionally sick with the symptoms of RA. But I think of it more as being “ill,” and as being temporary. I am not a “sick chick,” as a group blog about chronic illness calls itself, in the plural. To me, that phrase brings up an image of several preciously delicate female baby chickens with the vapors, draped languidly over multicolored fainting couches, each one fanning herself weakly, and with a jeweled vial of smelling salts close to hand.

I really don’t fit the bill. Sure, I have an autoimmune disease that sometimes makes me feel tired and ill, and sometimes makes my joints stiffen and become so painful that moving is difficult, if not impossible. RA permanently disables many people who get it, but hasn’t done that to me yet. And even if it does someday, I still won’t be “sick.” I still won’t be “ill.” I’ll simply have RA, and when I’m not flaring, I’ll feel just fine.

“Sick” isn’t another word for “chronic illness.” It’s just sick.

And as for asking for help, which was the main focus in Leslie’s post? Not looking “sick” or acting “sick” when we’re flaring makes it pretty hard for people to understand that we do have a chronic illness that occasionally flattens us. And not appearing or acting sick definitely makes it hard for us to ask for help, since we’re proud of our independence, work hard to hide our disability, and really dislike admitting defeat, which is what asking for help often seems like.

These issues will always be a part of having a chronic illness and coping with chronic pain. They always have been. And there’s no easy solution that I can see.

Still, I’ve learned over the years to swallow my pride and ask for help when I need it. I don’t always like to, and the people I ask help from aren’t always gracious about providing it. That, too, is simply reality. Life doesn’t always give us roses. If we’re lucky, we have friends and relatives who  do their best to understand us and treat us with love and compassion. But if they don’t, we need to understand that sometimes, they’re just simply clueless. If we haven’t told them the truth about our condition or explained it to the best of our ability, then we can’t expect instant empathy from them.

If we have explained and they’re still not helpful or understanding, then we have to look inward to pull from our own reserves of strength and courage. We also need to widen our circle of friends, and try to find the sort of people who are gifted, like us, with toughness and empathetic compassion.

It’s always a challenge, isn’t it.

Best friends

So I’m laying on my back on the bed this morning doing the stretching exercises that Joe taught me. Near the end of the 15-second hold of each stretch, I notice myself groaning. Yes, they hurt. Not horrifically, but just enough to make me vocalize my discomfort.

My old cat, PIB (Puss In Boots), who I brought to my Mom’s townhouse when I realized that

Not PIB, but so like him it's uncanny...

caring for her would be a more long-term occupation than I’d originally thought, walks delicately over to my stretched self and gazes at me curiously. He starts purring and reaches a white-socked paw out and carefully, gently, touches my cheek. Then he tucks himself into the L-shape made by my head and shoulder, curled up and warm as toast. His purrs are loud in my ear.

I do the rest of my stretches with a goofy smile on my face, my groans reduced to soft grunts, and those only when I forget to breathe deep through the stretch. It’s just incredible, the power our animal brothers and sisters can draw on to ease our distress.

Another lovely gift.