Good morning from the US! Just wanted to provide an update to my journey and recent rheumi telehealth appt. I was diagnosed Sept. 2020 and started on 20mg prednisone; tapered to 17.5mg and then 15mg with no problem; when tapering to 12.5mg had a flare so went back up to 15mg and rheumi kept me there through the holidays. Then tapered in 1.25mg increments until I got to 10mg; rheumi wanted me to taper to 7.5mg in one drop, but I reminded her that I couldn't do 15mg to 12.5mg in one drop so doubted 10mg to 7.5mg would work; so went to 9mg and then 8.5mg with no problem, but had another flare when dropping to 8mg; went back up to 10mg and reduced by .5mg to 8.5mg again, then started reducing by .25mg weekly; I am currently at 7.5mg, planning on reducing to 7.25mg this weekend. Had my bloodwork done and ESR and CRP levels are good.
Now to the rheumi appt. She felt that I am reducing too slowly. She wants me to be at 5mg in one month because her 'other patients' were reducing in 1mg drops every couple of weeks. I suggested that not all patients were alike and as this seemed to be working 'for me', and I was reducing by 1mg a month, that it seemed best to stay on this schedule. She felt I should be off prednisone within a year or a little over 'like most patients', and I questioned her that if the disease was still there, wouldn't rushing to be off prednisone cause a major flare? I did say that one thing I did not want to do was to yo-yo up and down with the dosages and thus had settled on this tapering schedule and had no negative effects from it so far. Ultimately she just scheduled me for a 2month in-person follow up appt with repeat bloodwork scheduled for just before. By my calculations, if no issues, I should be at 5.5mg by the time of my next rheumi appt which is at just about the one year anniversary of my diagnosis.
So thank you forum members, once again, for the invaluable information you provide. Without this forum I would have just been reducing on my rheumi's schedule, and probably experiencing flare after flare, just because she thinks I should be off prednisone within 12 months, regardless of the disease activity. Because of this forum I feel that I am very well informed and not afraid to question what the rheumi is saying.
Just a side note, in the U.S. we can get prescriptions filled for 90 days at a time, prednisone included. Right now I have about 250 5mg and 140 1mg prednisone tablets on hand. This gives me some security in that should there ever be a need to increase quickly for whatever reason, I have the medication available.
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SallyLeon
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found only 1 in 5 patients can discontinue pred after a year or less, only 1 in 3 is off by 2 years. Half of patients need pred for more than 6 years. She may claim the figures are skewed - but another 2 studies internationally have found quite similar timings that support the up-to-date view that PMR is a heterogenous and chronic complex disorder.
Doctors like her do none of us any good service - we worry about GP's lack of knowledge but it is becoming clear that there are a lot of rheumies who need education too.
As a footnote - keep an eye on the expiry dates of your hoard
Glad you managed to persuade her from the “much too fast” taper…..never fails to amaze us how little some Rheumies seem to know about PMR/GCA in practice - what the books “say” very often doesn’t equate to what happens in real life.
And me! Although I must take some of the blame. I wanted to be off the steroids as badly as she wanted me off. This forum def helped me understand the need to taper and STAY on, if necessary. I've been off for 4 weeks now and feeling good. It helps that it's summer (I'm a teacher) and I can swim for exercise and have limited stress. Fingers crossed I can maintain this in the fall when we go back to school.
Good for you for sticking to your guns! Why do some theumies lump all patients under the same umbrella? If you were working with a physio after recovering from, say, a broken ankle, would you be expected to keep up with with everyone else on his books?
Oh, the 'all in the mind' diagnosis! My niece spent years trying to get help for symptoms of whole body pain, fatigue, inability to concentrate. My sister had to take her in a wheelchair to one doctor who asked her, with a sneer, why she was in a wheelchair. He didn't get up from his chair but told her that her problems were not physical but psychological. She was finally diagnosed with ME/CFS and has been housebound for two years.
Thanks so much for posting all that! I am a newby to PMR (just 12 days) and to this group. I feel very fortunate to be learning so much from you all. Will be mindful of it all when taking advice from my Rheumatologist.
Good morning Space voyager and welcome. I was new to this forum after being diagnosed with PMR last March. I cannot extol the virtues of this brilliant group highly enough. Being diagnosed with a condition that I had not even heard of was initially overwhelming but not for long thanks to the expert advice, support, wisdom of this group. I now look forward to reading the Healthunlocked email that pops into my Inbox each morning at around 7.12am 👍👍👍
You will learn so much from the PMR Gurus/Experts/Ambassadors/Professionals on this forum..... it helps us to feel in control of our invisible condition. In such a short time, it has been a life line for me as it has been for so many fellow sufferers 🙏🙏
Thank you Pondweed. Shock and overwhelm were 2 feelings. Still processing through that. Beginning to embrace this as a journey. So happy I found you all. Also joined a local support group. Reading the morning emails too!
I was diagnosed last August at just 51 years old.My rheumatologist told me 12-18 months on Prednisone. I was on it for 9 months.
I had every adverse reaction to it.
I'm now on Actemra tapered pretty quickly off of pred, but am having some shoulder pain and a lot of stiffness. But nowhere near what it was last year!!
More bloodwork - levels are all good. He suggested I start taking 5 mgs again, I said I'd wait a week or two and see if I get better or worse and go from there. I really don't want to take prednisone again, if I can avoid it!
With that, I'd say do what you think is working for you and if your doctor won't listen to you and what your body is telling you, find a new doctor!!!!
Hi. Did you switch right from Pred to Acterma? My Rheumy wants to me to switch. I am currently at 10mg Pred and when I get to 7mg (not sure why that is a magic number) he wants to stop the Pred and go right to Acterma. Any side effects?
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