1. < Polymyalgia Rheumatica (PMR)

PMR and prednisone

Posted by gramsof6 @gramsof6, Sep 19 12:47am

I was diagnosed in April with PMR. Because it was mainly in my shoulders I saw an orthopedic surgeon who put me on an inflammatory. Shortly there after I had an appointment with my rheumatologist and diagnosed me promptly.
He started me on 5mg 2 to 3 a day of prednisone.
The problem is I am a diabetic but was only on metformin. Now I am using small doses of insulin. What I don't understand, did you stay on a consistent everyday?
On days I feel great I avoid taking my prednisone. Recently my pain is now in my thighs which is affecting my ability to walk. I have a granddaughter that plays college soccer, 2 granddaughters that play high school varsity soccer and we attend high school football games. This means that at least 4 times a week I am climbing bleachers. I believe this is a contributing factor to the thigh pain. I am OCD about my house, enjoy cooking and canning and I am also a quilter. I am finding these activities difficult too. I am really confused about the proper way I should be taking my prednisone. My rheumatologist is aware that I am concerned about my sugar and has not established a definite guide line for taking the prednisone. I use infrared heat, supplements, oils and Voltaren
I would appreciate any suggestions. I did receive a steroid injection in one arm because the bursa was so inflamed it caused a large painful bump. Has anyone tried physical therapy or massages? Today was horrible and I retreated to bed. I am so glad I found this group and am looking forward to any suggestions. We are planning a trip to Gatlinburg and would enjoy hiking. Thank you, Deb from Ohio

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DadCue | @dadcue | Sep 19 4:52am

Was your prescription written 5 mg of Prednisone 2-3 times per day as needed? Is your prescription for hydrocortisone?

The typical starting dose of Prednisone for PMR is 15 mg every day taking the entire dose every morning with food.

"Joint guidelines from the European League Against Rheumatism (EULAR) and the American College of Rheumatology (ACR) conditionally recommend starting corticosteroid therapy with 12.5-25 mg/day of prednisone or the equivalent. [30] A systematic examination of the peer-reviewed literature, which included 30 studies, found that most patients seemed to achieve remission of PMR with a starting dose of prednisone at 15 mg/day. A slow tapering of the prednisone, less than 1 mg/month, was associated with fewer relapses. Once prednisone is tapered to 10 mg/day, a further slow taper by 1 mg every 2 months until treatment discontinuation was associated with optimal control of disease activity. [43]"
https://emedicine.medscape.com/article/330815-treatment?form=fpf
-------------------------------
A side effect of Prednisone is increased blood glucose levels. The link above has several pages that discuss diet and exercise as well as how you should taper off Prednisone.

There is no single best way or correct way to taper off Prednisone no matter what you may read. There are too many factors to consider for someone to suggest they know the best way to taper. There is no research that supports any tapering strategy that works better except for a "slow taper." Nobody knows how slow because it is all based on your own individual symptoms and whether or not you relapse.

I must have done everything wrong because I was on Prednisone to treat PMR for more than 12 years. It took that long until my rheumatologist found a better treatment option for me.

REPLY
2 replies
reets70 | @reets70 | Sep 19 9:52am

I sat in my recliner for six months due to horrible PMR pain. I’m back on prednisone, every day, and I can now walk and exercise! I’m dealing with the prednisone side effects as best I can, but it feels wonderful to be able to make my own dinner, vacuum my floors, and basically feel human again! I’m 84 years old and feel like 54 because of the medication!💊

REPLY
2 replies
DadCue | @dadcue | Sep 19 10:19am
In reply to @reets70 "I sat in my recliner for six months due to horrible PMR pain. I’m back on..." + (show)
@reets70

I sat in my recliner for six months due to horrible PMR pain. I’m back on prednisone, every day, and I can now walk and exercise! I’m dealing with the prednisone side effects as best I can, but it feels wonderful to be able to make my own dinner, vacuum my floors, and basically feel human again! I’m 84 years old and feel like 54 because of the medication!💊

Jump to this post

"I’m 84 years old and feel like 54 because of the medication!"
-------------------------
This is better than the alternative ... I suppose. I was 52 when I was diagnosed and I felt like I was 152 and rigor mortis was setting in.

On high dose prednisone I once made a comment to my ophthalmologist when I was on the verge of going blind. I said, "I feel great, and I didn't really care if I ended up blind."

Another side effect of Prednisone is euphoria --- a false sense of feeling well.

My ophthalmologist thought I was feeling "too good." Fortunately the 100 mg prednisone dose I was on was beginning to work. My ophthalmologist told me to quickly taper down to a lower dose.

REPLY
1 reply
rosemargaret | @rosemargaret | Sep 19 10:31am

I have had (and still do) the thigh pain and difficulty walking and climbing bleachers for my granddaughters sporting events. The final diagnosis was damage the steroids had done from being taken for almost 7 years. PT does help to rebuild the muscles and other times causes a flare up so I had more pain. It's like a lose-lose situation.
Steroids are a miracle drug but also very dangerous. I have been down to 5 mg. for almost 2 years and still can't get below 3 in trying to taper off but I won't give up because of the dangers of bone loss, diabetes, etc. I will try my own way of strengthening by walking on the days I can (which are very few) and not pushing myself on the days of weakness, fatigue and pain. Good luck!

REPLY
1 reply
DadCue | @dadcue | Sep 19 10:39am
In reply to @rosemargaret "I have had (and still do) the thigh pain and difficulty walking and climbing bleachers for..." + (show)
@rosemargaret

I have had (and still do) the thigh pain and difficulty walking and climbing bleachers for my granddaughters sporting events. The final diagnosis was damage the steroids had done from being taken for almost 7 years. PT does help to rebuild the muscles and other times causes a flare up so I had more pain. It's like a lose-lose situation.
Steroids are a miracle drug but also very dangerous. I have been down to 5 mg. for almost 2 years and still can't get below 3 in trying to taper off but I won't give up because of the dangers of bone loss, diabetes, etc. I will try my own way of strengthening by walking on the days I can (which are very few) and not pushing myself on the days of weakness, fatigue and pain. Good luck!

Jump to this post

Good reminder!

REPLY
Marilyn McFarland | @1942marilyne | Sep 19 10:44am

Did anyone have trouble with prednisone Aurvino? I have bad stomach aches and have lost 5 lbs in 2 weeks. Have been on prednisone for 3 years. Changing brand now.

REPLY
seniormed | @seniormed | Sep 19 2:38pm

If both you and your rheumatologist have reservations about higher doses
of prednisone you might discus a biologic like Actemra or disease modifying
med like methotrexate to spare steroid increase.
Consider a Mediterranean anti-inflammatory diet plan also for glucose
control. Stretching and PT to your an ability.
I advocate cardiac risk evaluation. Statin myopathy is uncommon and
they are considered anti inflammatory.

REPLY
1 reply
gramsof6 | @gramsof6 | Sep 19 3:02pm
In reply to @seniormed "If both you and your rheumatologist have reservations about higher doses of prednisone you might discus..." + (show)
@seniormed

If both you and your rheumatologist have reservations about higher doses
of prednisone you might discus a biologic like Actemra or disease modifying
med like methotrexate to spare steroid increase.
Consider a Mediterranean anti-inflammatory diet plan also for glucose
control. Stretching and PT to your an ability.
I advocate cardiac risk evaluation. Statin myopathy is uncommon and
they are considered anti inflammatory.

Jump to this post

Thank you so
much. Looking for relief.

REPLY
reets70 | @reets70 | Sep 19 3:41pm
In reply to @dadcue ""I’m 84 years old and feel like 54 because of the medication!" ------------------------- This is better..." + (show)
@dadcue

"I’m 84 years old and feel like 54 because of the medication!"
-------------------------
This is better than the alternative ... I suppose. I was 52 when I was diagnosed and I felt like I was 152 and rigor mortis was setting in.

On high dose prednisone I once made a comment to my ophthalmologist when I was on the verge of going blind. I said, "I feel great, and I didn't really care if I ended up blind."

Another side effect of Prednisone is euphoria --- a false sense of feeling well.

My ophthalmologist thought I was feeling "too good." Fortunately the 100 mg prednisone dose I was on was beginning to work. My ophthalmologist told me to quickly taper down to a lower dose.

Jump to this post

100 mg! Wow! I suppose I’m doing really great on 20 mg!

REPLY
gramsof6 | @gramsof6 | Sep 19 5:09pm
In reply to @dadcue "Was your prescription written 5 mg of Prednisone 2-3 times per day as needed? Is your..." + (show)
@dadcue

Was your prescription written 5 mg of Prednisone 2-3 times per day as needed? Is your prescription for hydrocortisone?

The typical starting dose of Prednisone for PMR is 15 mg every day taking the entire dose every morning with food.

"Joint guidelines from the European League Against Rheumatism (EULAR) and the American College of Rheumatology (ACR) conditionally recommend starting corticosteroid therapy with 12.5-25 mg/day of prednisone or the equivalent. [30] A systematic examination of the peer-reviewed literature, which included 30 studies, found that most patients seemed to achieve remission of PMR with a starting dose of prednisone at 15 mg/day. A slow tapering of the prednisone, less than 1 mg/month, was associated with fewer relapses. Once prednisone is tapered to 10 mg/day, a further slow taper by 1 mg every 2 months until treatment discontinuation was associated with optimal control of disease activity. [43]"
https://emedicine.medscape.com/article/330815-treatment?form=fpf
-------------------------------
A side effect of Prednisone is increased blood glucose levels. The link above has several pages that discuss diet and exercise as well as how you should taper off Prednisone.

There is no single best way or correct way to taper off Prednisone no matter what you may read. There are too many factors to consider for someone to suggest they know the best way to taper. There is no research that supports any tapering strategy that works better except for a "slow taper." Nobody knows how slow because it is all based on your own individual symptoms and whether or not you relapse.

I must have done everything wrong because I was on Prednisone to treat PMR for more than 12 years. It took that long until my rheumatologist found a better treatment option for me.

Jump to this post

Yes 2 to 3 5mg per day. I didn't know I had to taper. Thank you fir the information.

REPLY
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