I'm been on Pred since I was diagnosed in Dec '17. Have never seen a rheumy, can't get one to accept me as a patient. GP has tried several times.
Anyway: I had heart surgery on the 1st of October, my heart surgeon reviewed my list of meds, saw the Pred prescription and asked what was I taking it for. I told him PMR (yep, just the letters).
He knew exactly what I was talking about. He told the nurse to increase my Pred dosage the day before the surgery to 40 mg and leave it there for 3 days. He told me to taper it back down to 15 mg within 2 weeks, which I did.
Saw him yesterday for the followup and ok to have the 2nd heart procedure done. He told me that once the 2nd procedure is done (mid November) he wants me to sloooowly taper down the Pred to 5 mg, if all I can do is 1 mg/month that's fine. So that's what I'm gonna do, after I consult with my GP. I'm pretty sure she will be ok with it.
The interesting part was a "throw-away" comment he made at the end. He said "Don't worry about 5mg of Pred", it's a minor concern given all the other things happening to me (Don't ask).
I was pretty impressed. A holistic doctor. BTW, this is a guy who wears cowboy boots to the office!
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Earl_the_Pearl
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It is quite usual for PMR to be treated by your GP. You’ve only got to read these pages to see that a Rheumatologist does not always add value. I’d stick with John Wayne - good luck with all you have going on right now,
Hello, everyone. It's been awhile, I thought I would update my story.
In December 2018, I was somewhere around 15 mg of Pred (once a day, in the morning), no symptoms of PMR. I had just had my catheter ablation for my a-fib (which followed the Hybrid Maze procedure.)
January-February 2019 I started the process of confirming a diagnosis of sleep apnea and having a second catheter ablation for a-flutter. The second ablation was successful, not completely but better. The sleep apnea was confirmed and I received my ASV device in May. I have been using it religiously ever since. In November, I saw my cardiologist. Good news on the a-fib/a-flutter. I had started a low carbohydrate diet in June and had lost 45 lbs. Good news also on the sleep-apnea. My cardiologist told me that sleep-apnea and arrhythmia are connected (What? Did he just say that? Wow!)
December 2019, DW had been out of town. When she arrived, she took one look at me and called my primary. The next day I was admitted to the hospital suffering from sepsis. They pumped me full of antibiotics. Seriously, really? Yep. Day after Christmas they put in a central line and sent me home for 10 days of follow up antibiotics.
January 2020, I had worked my way down to somewhere around 5mg Pred so I asked my primary "Any ideas? After talking to an endocrinologist, she told me that I should continue to reduce by 1/2 mg every 4-6 weeks. When I got to 1 mg/day. for a complete month. I was to make an appointment with the endocrinologist for a blood test.
February 2020 - June 2020 Covid-19 Self-Isolating. (My Primary doc says I'm "high risk" due to age and all of the above. )
Present day? I'm still on the 1 mg/day PRED, symptom free. (it is not the only drugs I'm on.)
Yes, I do need to get a referral to the endocrinologist and get the blood test. Hopefully soon. But, all things considered, I feel pretty good that I'm still here. I know a lot of you are dealing with the serious effects of PMR and other diseases and I wish you all the best.
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