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.
RheumaBlog 
Good luck with your taper! I *just* got off it myself, after a taper that lasted much longer (months) than expected. While it certainly provides relief while I am on it, it’s nice to be able to go through periods without it.
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Thank you, Guy. I remember you writing about starting your latest round of prednisone; you were determined not to allow it to make you overeat. How’d that go? I realize I’m on a very short taper, here, so weight gain probably won’t be a bit problem for me right now (the diet will help negate that, too), but it’s a real deal-killer for me, should a need for it come up again in the future.
I’d love to know that willpower is enough to avoid that particular side-effect! Hugs for you, m’friend. 🙂
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Welcome to the club. Sorry you had to join but hope the taper works for you. I have used it many a times to get through rough patches.
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Thanks, Mary. I really hope it does, too. That it’s worked so well for so many people gives me a lot of hope. Hugs to you. 😉
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Your rheumatologist sounds like a nice person!
Welcome to Club Pred. I sure hope this finally knocks that hip bursa back down where it belongs.
Maybe CRP instead of anti-CCP on the bloodwork? CRP looks at inflammation. There’s a new test, too, still in the experimental stages, so not too many doctors are ordering it. Maybe someday there will be a good test that accurately reflects what’s going on!
Congratulations on the weight loss. Very impressive. 🙂
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Oops! Yep, I meant CRP. (I’d seen some Russian photo images of cosmonaut Yuri Gagarin not long before writing this; many of them showed the cyrillic characters “CCP” for Soviet Socialist Republic. Sheesh.) And thanks for the congrats on the weight loss, Socks. After gaining about 10 while taking care of Mom, I’m trying Nutrasystem. I suppose it’s cheating (the diet meals are all provided), but hey, if it works, why not? I’m on the diabetic program. The food is amazingly decent. I’ve lost the 10 I gained in a month, and I’ve 40 to go. Woohoo!
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Well done on the weight loss! Wish I could do the same but seem to have lost any vestige of willpower I ever had! And I really hope ‘Club Pred’ does the job for you – worked for me … if only briefly … and it was sooooooooo good to get the pain relief! That flare’s gone now anyway thank goodness – don’t know what I’d do if I had to cope with similar pain for as long as your bursitis is going on!
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Wow! Good news all around (and kudos! for the weight loss). Hopefully you’ll get some relief from the bursitis and the other aches and pains and some well-deserved sleep!
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Haha, “Club Pred” – I love it!
I get through the hunger pangs with lots of Jello and microwave popcorn. For the popcorn, instead of using the prepackage type I use this following popper. You can add a dash of oil, a little bit of (real) butter, or nothing at all, and it still tastes great!
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Wren, hoping by now – approx. 24 hrs later, that you’re feeling like you can tackle anything and everything! That’s what I felt after I took my first dose of prednisone, well over a dozen years ago. The initial “euphoria” (no, you don’t feel high, you just finally feel NORMAL) doesn’t last forever with most RA’ers, but it sure does help you get through the day so much better than without it. I hope it and the other med give you some much deserved relief. Can you look into getting mom a stair lift, that perhaps you can use too, to give you both some relief on that end?
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How long are you meant to taper it for? Really hope it works! And well done about the weight loss, that’s no easy feat!!
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This is just one more club we would rather not belong too! I’m overweight too, but so far I have yet to join this club. Sounds like you have found a really good rheumatologist. That is worth so much.
Oh, almost forgot … good job on losing 10 lbs!
I thought RA Guy was going to say he did Jello shots to get through the hunger pains. lol I guess if you did enough of them you would forget you were hungry.
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Can I borrow your rheumy! What a nice person he sounds to be!
It doesn’t matter really since he has given you a steroid taper (and the result would tell the tale) BUT it is possible to have PMR with NO abnormal bloods. I have the most desirable ESR and CRP levels you could wish for. I also have PMR as differentially dx’d by a steroid taper when the worst of the stiffness symptoms were almost resolved in 6 hours! I walked downstairs like a big grown up person, not a toddler, dot and carry one! The bursitis took a couple of months to go properly – one day I woke up and there it was, gone! After months of hardly being able to walk around the house, never mind down the road it was such a relief. And to sleep… But I don’t need to tell you!
There is a PMR-GCA charity which has been set up in the UK to try to bring the truth about PMR to the world – so many rheumys (never mind the PCPs) are not aware of the less common presentations, like under 55, atypical signs and symptoms, especially the bloods.
Hope the steroids work – I put on weight because of the immobility due to the PMR before I started steroids and after 18 months have no identifiable side-effects as yet. I’m down to just under 10mg/day but taken as alternate day therapy and I’m mobile. Iwas lower but had a flare last summer that has been difficult to deal with – I probably had a UTI for months that wasn’t dx’d. Recommended is highish protein intake and low carbs – helps avoid muscle wasting and the effect of steroids on your carb metabolism which is what leads to the weight gain and risk of diabetes. Good luck!
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Prednisone doesn’t mean increased appetite for everyone. I have been on it several times without any weight gain. So, keep visualizing those ten pounds lost because it doesn’t mean you will gain them back. Prednisone did relieve the pain though which is really nice. The bad? Each time it took longer to get off of then I originally planned. However, the relief from pain is worth it.
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Welcome to the club and I so much hope for you that it’ll ease that pain! Soon!
You don’t have to suffer all of the side effects – remember that. I have been with it for 14 months now, started at 80 mg and now at 5 mg with a very very slow tapering incl. some boosters of 100 and 200 mg in between and I have been told that I’ll have to stay with 5 mg for the next couple of years at least.
Anyway, no moon-face for me and minimal weight gain. You can keep the weight gain low if you reduce your salt in food to almost nil and stay away from sweet stuff as much as possible. But do ask your doc about extra calcium and vit D supplements as steroids unfortunately increase the risk of osteoporosis and you certainly don’t want to go down that road.
I did get gastritis from the steroids early on and have to take pantoprazole now to keep it in check.
It’s not a joyride with the mood swings but at least you’ll know why.
So let’s hope it will work for you. Cheers!
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Oh and another thing: steroids should be taken between 6 and 8 am to work best as this is the time our body produces its own cortisone. This way you will avoid any possible impact on your sleep due to the extra dose.
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