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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tweetypie13 | @tweetypie13 | 2 days ago
In reply to @boo3 "Thanks for the comments. I do believe after reading all the other posts that I may..." + (show)
@boo3

Thanks for the comments. I do believe after reading all the other posts that I may have been on an unrealistic schedule. Only started the 20 mg beginning of December’24 and not truly understanding the condition attempted weaning too much too soon. Rheumatologist not a big help but from what I see most of these posts state that they lower their doses by feeling. Trial and error. I golf (which I don’t do as much at this time) but still try with an Advil or two.

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My Dr said to use Tylenol for,Arthritis……not Advil
Works for golf

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jimp | @boo3 | 2 days ago
In reply to @greysky "@boo3 I have the pain in my hands and shoulders, every day is different… always painful…..diagnosed..." + (show)
@greysky

@boo3 I have the pain in my hands and shoulders, every day is different… always painful…..diagnosed 12/28/24 down to 5 mg from 25 …. I don’t want to increase!
I love that there is a place that we can talk with people that have the same dx.
Very helpful 😊

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greysky …I believe we are on same page, but as I have posted before I wanted off prednisone the day after I started taking it and I do believe I (being uneducated) started way to soon and by too many milligrams. I was adamant that I would live with the pain and it would go away. Wrong. After a month or two of no or little pain in initial sites of PRM and worsening in hands and wrists I drastically increased back to 14 (where I was getting relief) .. staying there for two or so weeks and then will begin to wean off only this time one milligram every 7 or 10 days to see how pain reacts. More than one doctor and multiple health sites tell us that inflammation and living with the pain is detrimental to our health both physical and mentally. So I (and each of us has to make decisions for what we believe is best for ourselves) am going to try again only slower this time.

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art43 | @art43 | 2 days ago
In reply to @allinge "Tapering off, 1 mg every three weeks, was the advice of my doctor. I now have..." + (show)
@allinge

Tapering off, 1 mg every three weeks, was the advice of my doctor. I now have an appointment with him next week. I upped my dose to 3mg and am beginning to feel less pain. If I have to stay on that, so be it. There is a waiting list of a year before I can see a rheumatologist.

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This worked for me, maybe not for you:
Below 5, taper at 0.5 per month.
In any case, avoid starting a chase that includes bouncing balls of dosages. Find a dose…maybe your 3mg…that works, stay on it for a while, maybe at least a week, then start the 0.5 per month taper.
No matter what path you take, you can expect minor transient pains at random locations.
A rheumatologist would be nice, but is not necessary. Absent medically complicating factors requiring specialists, a PC doc with an interest in working with you and improving their skills can be sufficient.
Best of luck.

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jimp | @boo3 | 2 days ago
In reply to @heals1225 "Hey @boo3 Sorry to hear you went from tapering down to 2 then back up to..." + (show)
@heals1225

Hey @boo3
Sorry to hear you went from tapering down to 2 then back up to 14. I’m currently with my second bout of PMR, approximately 10 years apart. Been on prednisone for two years now, which was my tapering time to be completely free of it 10 years ago. I am now on 5 mg this month, but was down to 2 in December until I had 3 excruciating days which brought me back up to 10. Have been tapering 1mg/month since February. Starting in July I will take @megz advice and taper .5mg/month using her schedule as well, and hope for the best. I wish everyone suffering with these symptoms all the best in their road to recovery!

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Heals1225… When you increased back to 10 did you arbitrarily choose 10 or did you attempt any lesser dosage between the 10 and 3?

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1 reply
jedhorovitz | @jedhorovitz | 2 days ago
In reply to @boo3 "Diagnosed in December by GP and he put me on 20mg of prednisone and relief was..." + (show)
@boo3

Diagnosed in December by GP and he put me on 20mg of prednisone and relief was almost immediate. Over last six months have attempted to wean to lower doses, but found that I may have tried too soon. Original excruciating pain in shoulders and hips went away but then pain in hands, (fingers and wrists) and knees. Questioned rheumatologist about that and was advised that it was probably OA so I continued my weaning thinking that new pain was not related to PMR. WHEN I GOT TO ABOUT 2mg and realized pain was a bit over the top reached out again and was told that though PMR does not generally attack the hands and knees it was possible that it was the cause of that pain. Huh? Anyway back up to 14mg with lots of relief. Posting this so those new to PMR and prednisone can see that though our doctors are good they are still practicing and using this forum is probably the best way for all PMR people to make good judgements on their own and for themselves.

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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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2 replies
jeff97 | @jeff97 | 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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That sounds like a big disaster waiting to happen. You've been on prednisone a long time, so your adrenal glands are probably offline. When I started tapering down from 5 mg, my rheumatologist told me to taper 1 mg per month. I also take weekly Actemra injections, so my PMR and GCA are controlled by the Actemra. My biggest risk with each 1 mg step down is running into adrenal insufficiency. If you go from 5 mg to 0 in one step, you could feel really bad in the best case, and maybe go into adrenal crisis in the worst case. You could also have a bad PMR flare. Most people who are not taking a biologic drug like Actemra or Kevzara taper a half milligram a month in order to avoid a flare or adrenal insufficiency.

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jedhorovitz | @jedhorovitz | 2 days ago

I see my doc in a week and will bring your (my) concerns up.

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heals1225 | @heals1225 | 2 days ago
In reply to @boo3 "Heals1225… When you increased back to 10 did you arbitrarily choose 10 or did you attempt..." + (show)
@boo3

Heals1225… When you increased back to 10 did you arbitrarily choose 10 or did you attempt any lesser dosage between the 10 and 3?

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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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1 reply
Howdy! | @kereno | 1 day ago
In reply to @jeff97 "It sounds to me like you tapered too fast or too far. If you felt good..." + (show)
@jeff97

It sounds to me like you tapered too fast or too far. If you felt good at 2 mg, you could try to go up to 7 mg (2 mg + 5 for relief) and stay there for a couple of weeks. Then you could taper back down to 2, maybe in 2.5 mg steps, and when you get to 2, stay there for a month. Then taper in half milligram steps, where you stay at each level for a month. Or you could check with your doctor and see what he/she thinks ...

I just stepped down to 2 mg today, and I'll be at this dose for a month. I'll step down to 1 mg then, but I'm also taking Actemra.

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I am thinking in terms of percentages. 5.0 mg is a decent descending step when you’re at the higher doses but I am decreasing by 0.25 now that I’m weaning from 2.0. I don’t mind supplementing with acetaminophen and the SPM I got from my naturopath to relieve pain.

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1 reply
jeff97 | @jeff97 | 1 day ago
In reply to @kereno "I am thinking in terms of percentages. 5.0 mg is a decent descending step when you’re..." + (show)
@kereno

I am thinking in terms of percentages. 5.0 mg is a decent descending step when you’re at the higher doses but I am decreasing by 0.25 now that I’m weaning from 2.0. I don’t mind supplementing with acetaminophen and the SPM I got from my naturopath to relieve pain.

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

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