1. < Polymyalgia Rheumatica (PMR)

Weaning off of prednisone & pain management

Posted by joan7 @joan7, Feb 25 9:11am

Last Tuesday, I went down from 7.5 mg of Prednisone down to 5 mgs. For the past 4 days my pain level has been a 12 out of 10. I could barely walk. Although I hate to take Advil, Motrin, etc., I took 2 Advil Gels and within 1 hour I felt better (not perfect, but a lot better). Hours later the pain started to come back but was maybe a 6 out of 10. The next morning I was crippled by the pain all over again. I forced myself to get moving, but could barely get around. Drank a lot of ice water, and before I went to bed, I raised the head part of my bed up and fell asleep. Woke up this morning with very little pain. Has anyone experienced any type of correlation between raising your head up vs laying flat, and the amount of pain you will experience? Had that slight change made that much of a difference in your pain level? I have found that drinking almost all my drinks with a lot of ice, definitely helps with internal inflammation. What are your experiences or thoughts regarding this matter? Thanks!

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sandiw77 | @sandiw77 | Feb 26 11:27am

I sleep with my bed elevated most nights just because I also have degenerative disc disease and it takes pressure off the worse parts of my spine. I haven’t noticed any improvement in my polymyalgia hip or shoulder pain but glad that seems to have made a difference for you! ❤️ Blessings!

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nancy53 | @nancy53 | Feb 26 1:00pm

I do find sleeping with my head somewhat elevated comfortable. I also put a pillow under my knees.

Hope your tapering continues well!

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emo | @emo | Feb 26 1:05pm
In reply to @emaureen "That drop is too steep. Try not to go more than 10% at a time. At..." + (show)
@emaureen

That drop is too steep. Try not to go more than 10% at a time. At 10mg, I was okay dropping by .5mg every 10-11 days (changeover is on Sunday or Wednesday). However, that didn't work for me after I hit 5mg, Arm pain reappeared and was increasing - after ten days at 4.5 I was noticeably uncomfortable. When I started 4mg, the pain worsened. Although I have osteoporosis and would REALLY like to get off prednisone as soon as possible, after three days at 4mg. I decided to backtrack. Took one 5mg tablet, then restarted at 4.75. Pain stopped, although I wouldn't go so far as to say that my arms feel exactly as they did before PMR... but then, I'm 80. Caveat is that I'm at 4mg now, so I can't report on how the whole distance will go. With each drop of .25mg, there has been no pain other than barely noticeable discomfort getting dressed in the morning. I don't think about PMR very often.

Also, I was told to avoid Advil and aspirin (NSAIDs). Tylenol is okay.

Jump to this post

I agree…slow, slow, slow, seems safest. If it goes well, we can always drop even more, but triggering a flare usually means at least another weak or more of discomfort.

My dad was at 5 mg, but started 6 mg today because he’s been having extreme fatigue and ESR is elevated.

Sounds like you’re doing great and have found a way to listen to your body.

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joan7 | @joan7 | Feb 26 4:17pm
In reply to @art43 "A couple of thoughts: 1) Compared to other folks experience here (and mine), jumping from 7.5..." + (show)
@art43

A couple of thoughts:
1) Compared to other folks experience here (and mine), jumping from 7.5 to 5 seems like a bit much once you were at/near/below the physiological dose (which can be either 10 or 7.5 depending on the source). At this point, it would seem to be desirable to determine whether the pain is being caused by PMR, or another condition. That needs to be diagnosed by testing...an ESR for starters.
2) Drug interaction checker suggests that it can be problematic and even dangerous to take NSAID's such as Advil while on prednisone, and suggests that that should be done only with MD supervision. There can be increased risk of intestinal perforation by taking both drugs simultaneously, as they reinforce the toxicity of each other. I am on prednisone 8, and my doc only approved concurrent Tylenol, which evidently does not have the side effects of NSAID's while on prednisone. I have been tapering only 1 mg per month since 10 mg and have not had any pain issues at the level you are experiencing.
3) Because of 1 and 2 above, and because everyone does not have the same reactions to the common drug therapies available, please get your doc involved ASAP.

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My PMR was within normal range while I was on 7.5 mg and I'm not due for another two weeks for more blood work. The pain passed thank God! I always spread out all my meds and did check online to see if there were any interactions, and there were none listed. I probably should have at least contacted my pharmacy before taking the Advil, but I was not in my right mind at the time. Lesson learned. Thank you so much for your info.

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joan7 | @joan7 | Feb 26 4:28pm
In reply to @mikeydee "For me, I found dropping by 0.25mg prednisone every 6 days worked after I had several..." + (show)
@mikeydee

For me, I found dropping by 0.25mg prednisone every 6 days worked after I had several flares when I tried to go below 9mg. To do this I became a good pill splitter using a pill cutter found at the pharmacy and 5mg and 1mg pills. Even at 0.25mg per day I found the prednisone still had a considerable effect on masking pain and discomfort. My prednisone ended on Dec 31 2023. Since then I have had ups and downs with pain mainly in the nerve area. It was like my nerve endings had to wake up and work again. Pain here...pain there... but only lasted for a few days in each location, Weather seemed to play a significant role in the pain level and aches. Walking and exercise thru the day really helped to lessen the morning aches and day stiffness. Feet and knee neuropathy is still my main issue along with minor joint/muscle aches.
I have learned..."Keep moving!!!!!! They don't keep race horses in the barn. Its move or the glue factory!!"
Mike

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I never thought of only dropping 0.25 mg Prednisone every 6 days. Is this something you did on your own that worked for you or did your doctor recommend this? This is an excellent idea!

I'm sorry that you are having pain in the nerve areas and aches. This is a terrible disease that is so unpredictable from day to day. I have been keeping myself very busy until yesterday when I started with chills and a sore throat. I took Airborne and feeling better today. I plan to relax the rest of the day, but tomorrow it's back to taking care of the kids, dogs, house, working, etc.

I loved your final comment. Well, I'm not in as good of shape as a race horse unfortunately, but I'm too young to go to the glue factory. So I will take your sincere words of advice, I'll "Keep moving"! Thank you for responding to my questions and for all your input.

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1 reply
joan7 | @joan7 | Feb 26 4:48pm
In reply to @emaureen "That drop is too steep. Try not to go more than 10% at a time. At..." + (show)
@emaureen

That drop is too steep. Try not to go more than 10% at a time. At 10mg, I was okay dropping by .5mg every 10-11 days (changeover is on Sunday or Wednesday). However, that didn't work for me after I hit 5mg, Arm pain reappeared and was increasing - after ten days at 4.5 I was noticeably uncomfortable. When I started 4mg, the pain worsened. Although I have osteoporosis and would REALLY like to get off prednisone as soon as possible, after three days at 4mg. I decided to backtrack. Took one 5mg tablet, then restarted at 4.75. Pain stopped, although I wouldn't go so far as to say that my arms feel exactly as they did before PMR... but then, I'm 80. Caveat is that I'm at 4mg now, so I can't report on how the whole distance will go. With each drop of .25mg, there has been no pain other than barely noticeable discomfort getting dressed in the morning. I don't think about PMR very often.

Also, I was told to avoid Advil and aspirin (NSAIDs). Tylenol is okay.

Jump to this post

Thank you soooo much for your feedback. It is very helpful. I never ever thought of lowering my dose of Prednisone by .5 or .25 etc. That may be the way I go. Did your doctor recommend this or was this just what worked for you? I always try to stick with what the doctors says, but have also found out in the past that what doctors have recommended haven't always worked for me. I'm willing to try anything just so I don't have another bout of the pain i just had. Thanks again for the info!

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2 replies
emaureen | @emaureen | Feb 27 12:45am
In reply to @joan7 "Thank you soooo much for your feedback. It is very helpful. I never ever thought of..." + (show)
@joan7

Thank you soooo much for your feedback. It is very helpful. I never ever thought of lowering my dose of Prednisone by .5 or .25 etc. That may be the way I go. Did your doctor recommend this or was this just what worked for you? I always try to stick with what the doctors says, but have also found out in the past that what doctors have recommended haven't always worked for me. I'm willing to try anything just so I don't have another bout of the pain i just had. Thanks again for the info!

Jump to this post

I wouldn't go so far as to say that lowering by .5 or .25mg was my idea. My guess is that the rheumatologist uses the easiest instructions to follow - i.e., after 10mg, reduce by 1mg every 2 to 4 weeks. As well as the Mayo PMR forums, Facebook also has a very busy (and less organized) PMR area with some 16,000 participants when I joined. Polymyalgia rheumatica seems to be the most common ailment that no one has ever heard of, so commonly a first post reflects utter shock.

Tapering by percentages is often brought up and made more sense to me than dropping by 1mg when the base amount kept changing.

Here's a copied list of the percentage drop if you just taper by 1mg each time:
10-9 is 10%
9-8 is 11%
8-7 is 12.5%
7-6 is 14.2%
6-5 is 16.6%
5-4 is 20%
4-3 is 25%
3-2 is 33.3%
2-1 is 50%

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1 reply
emo | @emo | Feb 27 8:48am
In reply to @joan7 "Thank you soooo much for your feedback. It is very helpful. I never ever thought of..." + (show)
@joan7

Thank you soooo much for your feedback. It is very helpful. I never ever thought of lowering my dose of Prednisone by .5 or .25 etc. That may be the way I go. Did your doctor recommend this or was this just what worked for you? I always try to stick with what the doctors says, but have also found out in the past that what doctors have recommended haven't always worked for me. I'm willing to try anything just so I don't have another bout of the pain i just had. Thanks again for the info!

Jump to this post

Honestly, after we found the proposed reduction in dose causes flares for my dad, we simply told his rheumatologist we wanted to slow down the taper and she said that was fine. We make it as small as is reasonable and doesn’t drive us crazy as far as chopping up the various denominations of pills haha.

But in my family, we’re all very sensitive to medications and used to having to make adjustments and advocate or ask if there’s a different way (within reason). And thankfully his rheumatologist encourages being thoughtful about it and deciding what works for his body.

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maggie14 | @maggie14 | Feb 28 8:48pm

I find the percentage information really interesting . No wonder we have flares as we go lower. My rheumy is good and has me going down 1/2 mg. a month. I am down to 6 mgs. but having some pain so may try 1/4 mg. reduction to see if that helps.

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mikeydee | @mikeydee | Mar 3 9:04am
In reply to @joan7 "I never thought of only dropping 0.25 mg Prednisone every 6 days. Is this something you..." + (show)
@joan7

I never thought of only dropping 0.25 mg Prednisone every 6 days. Is this something you did on your own that worked for you or did your doctor recommend this? This is an excellent idea!

I'm sorry that you are having pain in the nerve areas and aches. This is a terrible disease that is so unpredictable from day to day. I have been keeping myself very busy until yesterday when I started with chills and a sore throat. I took Airborne and feeling better today. I plan to relax the rest of the day, but tomorrow it's back to taking care of the kids, dogs, house, working, etc.

I loved your final comment. Well, I'm not in as good of shape as a race horse unfortunately, but I'm too young to go to the glue factory. So I will take your sincere words of advice, I'll "Keep moving"! Thank you for responding to my questions and for all your input.

Jump to this post

After reading a ton of posts on a facebook's Healthunlocked, the posters all take prednisone plus more, I came up with my tapering plan of 0.25mg every 6 days. By the 3rd day after the taper how I felt predicted success at that level. A few times I had to extend due to not feeling well or a cold.

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