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Weaning off of prednisone & pain management
Polymyalgia Rheumatica (PMR) | Last Active: Apr 28 2:43pm | Replies (56)Comment receiving replies
Good morning, I’m 68 and diagnosed with PMR last October, 2023. I started at 20mg. No problem with tapering until February 29, 2 weeks after I started 7.5 mg. My neck (turning both ways and especially looking down) started getting sore and stiff on both sides. Tried acetaminophen and physical therapy, but it wasn’t getting better, maybe a little worse after 9 days. I realized my initial symptoms of PMR were neck related like I was getting, but I was also feeling quite unwell/nauseous too. Thought it might be a flare, so I upped my dose to 10 Saturday, minimal help, so went to 12.5 for 2 days, felt better, still a bit unwell, then 10 mg (today). Haven’t heard back from Rheumatologist after messaging her yesterday. This morning only some discomfort on my left side of neck. And slight nausea, took some Pepcid for that. So disappointed in myself. Any thoughts, thank you!
Replies to "Good morning, I’m 68 and diagnosed with PMR last October, 2023. I started at 20mg. No..."
You’re doing great. Once I got down to 10mgs the process slowed down considerably. Lots of lowering and raising and smaller changes like 1mg down. Sometimes took several weeks or more to get there but eventually it worked and then I’d cruise there for a while till I was ready to try again. Give yourself a pass on this and just keep working on it
Did you go straight from 10mg dose down to 7.5mg? If so, that was much too big a reduction in one go. What is your reduction schedule? Sometimes the flares will happen anyway, even with great care.
One thing a lot of us seem to forget is that prednisone does not cure PMR. If we get to a certain dosage level and flare, it likely means we have reduced below our lowest effective dose and the PMR is still active.
No need to feel disappointed in yourself; sounds like you’re doing great. It’s a very hard thing to listen to your body and to be open to doing what works best for you, even if it may not have been what you really wanted to be doing.
My dad also started having more challenges when he got around the 7.5 mg mark. It’s right about there where he had more frequent instances of having to go up, then down, up again, then down. Sometimes he’d keep same dose for a month or more. It was also around the 7.5 mark that he started tapering by .5 mg each time, so you could consider slowing down the taper and talk with your rheumatologist about it when they get back to you, hopefully soon!
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No sense feeling disappointed with yourself. It seems like everyone has experienced some difficulty at or near that 7 mg dose of Prednisone. I wonder why?
It might be the dose that your adrenals need to contribute some cortisol to regulate inflammation better. If your adrenals don't do that in a timely manner, you will have problems. If your adrenals don't contribute some cortisol, then your only option is to take more Prednisone.
I think you are doing well to get to 7.5 mg in 6 months. It took me 12 years to get anywhere near 7 mg. I was well above 20 mg of Prednisone daily for my first 10 years.