1. < Polymyalgia Rheumatica (PMR)

Down to 1mg prednisone and then extreme fatigue sets in.

Posted by allinge @allinge, 4 days ago

I was diagnosed with PMR in January after ending up in emergency with extreme pain and unable to walk. In the hospital they gave me Prednisone 35-40 mg and an hour later, I felt such relief. Over these past months I've tapered down to 2mg last week and then to 1mg three days ago. Suddenly I'm in pain all in my legs, arms and back. I upped to 2mg but no relief yet. The strange thing is how extremely tired I've become in the mornings and the pain doesn't subside till late afternoon. Just wondering if anyone else has experienced this?

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art43 | @art43 | 2 days ago
In reply to @jedhorovitz "My history is very similar. PMR started about 10 months ago with extreme pain. 40 mg..." + (show)
@jedhorovitz

My history is very similar. PMR started about 10 months ago with extreme pain. 40 mg prednisone for two weeks knocked out the pain. Doc reduced dosage to 20 mg and I had mild discomfort. Went to 10 and pains came back. 15 for about 5 months and then (at my urging) went down to 10 for a couple months. Now at 5 per day. "Only" symptom is serious muscle fatigue which doc says is either from PMR or prednisone "withdrawal", or something else we haven't pinpointed yet. (Argh) He has me tapering off completely over two more weeks. This seems really fast compared to most of the posters here. I am aware that every person has a unique experience but mine seems outside the norm. Or the gentle folks on this forum have worse than average cases. Thoughts?

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Waaaaay outside any norm.
Be careful, and aware of adrenal insufficiency and adrenal crisis. Unless I am missing something, I agree with the “…disaster waiting to happen” reply by someone else.
If possible, you should get a second opinion stat.

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megz | @megz | 1 day ago
In reply to @jeff97 "So you're splitting 1 mg pills twice? Those are some small pills ..." + (show)
@jeff97

So you're splitting 1 mg pills twice? Those are some small pills ...

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Yes, attempting to cut a 1mg tablet into quarters would be frustrating and inaccurate. A reduction with alternating day doses of 2mg & 1.5mg would give a .25mg drop.

This is my planned drop from 2mg to 1.5mg. Week 2 is a .25mg drop. I put it on the calendar each reduction and the weekly meds are made up from the calendar. (Not down to 2mg yet. Currently reducing to 3mg, week 3.)
Week 1: 2 / 1.5 / 2 / 2 / 1.5 / 2 / 2
Week 2: 1.5 / 2 / 1.5 / 2 / 1.5 / 2 / 1.5
Week 3: 1.5 / 2 / 1.5 / 1.5 / 2 / 1.5 / 1.5
Week 4: Stay on 1.5mg to stabilise

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Howdy! | @kereno | 1 day ago
In reply to @jeff97 "So you're splitting 1 mg pills twice? Those are some small pills ..." + (show)
@jeff97

So you're splitting 1 mg pills twice? Those are some small pills ...

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Yes sir I am. The quarter -sized pills are the risers on my steps. I don’t stay on them long (maybe 4 days or so depending on how I’m feeling) and then settle into my new tread before descending once again. If you follow my metaphor, the steps are suitable for a walker (i.e., steps are long and wide, but not tall).

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ailish | @ailish | 1 day ago

I was diagnosed with PMR end November 2024. I am currently on 8mg of prednisone per day. I was stuck on 10mg for over 2 months. I then started taking Magnesium ( liquid not tablets) every morning & cod liver oil (liquid) & my journey to 8 mg was easy & relatively painless. I am ready to move on to 7mg & I do feel that taking those supplements have helped me enormously. I am able to take part in aqua aerobics, walking & the gym.
Good luck to everybody fighting this one, the key is to taper very slowly.

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art43 | @art43 | 1 day ago
In reply to @heals1225 "Yes, my rheumatologist had me go from 2 mg to 4 mg with no relief, then..." + (show)
@heals1225

Yes, my rheumatologist had me go from 2 mg to 4 mg with no relief, then went to 10 for total relief and stayed there for a month and a half. Then began tapering 1mg/month. Now at 5, and will next do .5 mg tapering per month. Hoping the slower and longer tapering approach does the job this time. 🤞

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To heals1225

Your current taper plan of 0.5 per month for the last 5 worked just fine to get me to zero four months ago.
You will probably have some transient pains as your adrenals hopefully resume full production.
Hope it works for you. Good luck.

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1 reply
art43 | @art43 | 1 day ago
In reply to @chpfireball "I had exactly the same problem with my hands, wrists and knees Was told it was..." + (show)
@chpfireball

I had exactly the same problem with my hands, wrists and knees Was told it was OA, then RA but blood test don't support. I couldn't make a fist anymore or even button my clothes. I was put back on Prednisone 10mg for one month, then alternated 10 mg/5 mg every other day for two weeks. Now at 5mg for a month. I have some bad days that 1000mg have been able to work for the pain. Rheumatologist still has no explanation for the hand/wrist swelling and pain.

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OA is usually diagnosed with imaging…x-ray or ultrasound.
Good luck.

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heals1225 | @heals1225 | 1 day ago
In reply to @art43 "To heals1225 Your current taper plan of 0.5 per month for the last 5 worked just..." + (show)
@art43

To heals1225

Your current taper plan of 0.5 per month for the last 5 worked just fine to get me to zero four months ago.
You will probably have some transient pains as your adrenals hopefully resume full production.
Hope it works for you. Good luck.

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So happy for you Art! 😀

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