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.
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.