1. < Polymyalgia Rheumatica (PMR)
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Prednisone withdrawal and Unlikely Additional Symptoms

Posted by dswilson913 @dswilson913, 6 days ago

I am down to 2 mg of prednisone. Really struggling. On Day 10 of 10 at 2 mg. Tomorrow alternating 1 mg 2 mg for 10 days. Fatigue so significant after sitting down after few minutes. Pmr seems controlled. No stiffness, fuctional and range of motion intact. Problem fatigue, pain increasing and additional issues pain in hips. Wasn't part of original issue that was shoulder arms. Difficult swelling feels like lump in throat. X-ray revealed metal hernia. Am I making these symptoms up. Oh, dizziness is new and brain fog uptick.

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cyndiefromnc | @cyndiefromnc | 5 days ago
In reply to @boo3 "70 year old next month. I will not go into symptoms that caused me to be..." + (show)
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70 year old next month. I will not go into symptoms that caused me to be originally diagnosed with PMR but began my treatment with 20mg about 15 months ago. I am now down to 2 and 1 mg’s daily. I did notice that I was unusually fatigued throughout the day and actually made comment to wife that I felt like I needed a nap right after I woke. And I sleep pretty well. After about two weeks I AI’d it and found that this fatigue is actually one of the side effects of the Adrenal gland waking up among a few others. Also some stiffness in hips first thing in morning but comes and goes through out the day. For me personally I am still able to walk 2 to 4 miles a day and play golf so the soreness /stiffness is acceptable to be off the prednisone. I would say though that new pains in areas, especially if they are debilitating could be PMR, but as I have learned on my own journey and reading many posts on this site, PMR is different for everyone and though we see doctors it is us in control of our body’s. One thing my rheumatologist does check when I see her every 6 months or so is for rheumatoid arthritis due to some issues with hands and fingers. So far so good.

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@boo3 My experience is very similar to yours. 70 this month; 15 months on prednisone; 20mg down to 1.5; active-runner/walk 6 miles a day; little stiff in am; surprising fatigue right now; a little pain in my hands and fingers.
I was shocked how similar our cases are. Thank you so much for posting about fatigue and Adrenal gland wake up. I'm going to research that because I am experience fatigue too and while I can work through minor pain, I don't have time for fatigue.
Let's hope we are in the 50% of PMR patients who taper and quit prednisone but don't relapse. And prayers for all those that do!
And
Oh gosh...reading some of the other comments. Hugs to all. Please find a good rheumatologist. I changed rheumatologists six months ago and she slowed down my taper. She's been great. Good luck everyone.

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cazwell50 | @cazwell50 | 4 days ago
In reply to @pawprintpeg "I had anticipated with maybe too much joy getting off prednisone soon and am down to..." + (show)
Profile picture for pawprintpeg @pawprintpeg

I had anticipated with maybe too much joy getting off prednisone soon and am down to 2mg recently but some of my symptoms and the way I feel have me considering going back to 3 mg for relief (sore and weak hips, arthritic shoulders in morning), and trying to start 2 mg again in a month, but I don’t see how things would be different in a month. When I completely get off prednisone is there a period of weird aches and pains to expect or other adjustment to expect?

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@pawprintpeg yes, expect 12-18 months of slowly decreasing stiffness but I found gentle gym and Pilates, as well as swimming really helped. Avoid returning to prednisone as it gave me osteoporosis and it takes so long to feel relatively normal again. I’m 3 years clear.

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jabrown0407 | @jabrown0407 | 4 days ago
In reply to @pawprintpeg "I had anticipated with maybe too much joy getting off prednisone soon and am down to..." + (show)
Profile picture for pawprintpeg @pawprintpeg

I had anticipated with maybe too much joy getting off prednisone soon and am down to 2mg recently but some of my symptoms and the way I feel have me considering going back to 3 mg for relief (sore and weak hips, arthritic shoulders in morning), and trying to start 2 mg again in a month, but I don’t see how things would be different in a month. When I completely get off prednisone is there a period of weird aches and pains to expect or other adjustment to expect?

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@pawprintpeg You might consider going back to 3mg for 30 days, then do 30 days of alternating between 3mg on the first day, then 2mg the second day before you go to 2mg per day. You could also lengthen the time from 30 days to 45 days. It sounds to me that your adrenal glands are not wanting to wake up and totally participate. You might want to talk with your doctor before trying it, but you do have options. Slow and easy wins this. Don't rush your body.

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jabrown0407 | @jabrown0407 | 3 days ago

A taper schedule is a plan and all plans need to be reviewed and adjusted based on current facts. If I were in your position I would stay at 3mg until the problems resolve. You are definitely at the point where your adrenal glands are struggling to wake up and function as the did prior to prednisone. Your body does not care about the arbitrary rules (,i,e, your schedule) and it is your body that you depend on - please be kind to your body. Make sure and let your doctor know what has happened and what you are doing, If the goal is successfully taper off of prednisone then the date on which is accomplished is a minor part of that plan. You are down to 3mg (trying to get to 2) and that alone is worthy of celebration.

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jimp | @boo3 | 3 days ago
In reply to @boo3 "70 year old next month. I will not go into symptoms that caused me to be..." + (show)
Profile picture for jimp @boo3

70 year old next month. I will not go into symptoms that caused me to be originally diagnosed with PMR but began my treatment with 20mg about 15 months ago. I am now down to 2 and 1 mg’s daily. I did notice that I was unusually fatigued throughout the day and actually made comment to wife that I felt like I needed a nap right after I woke. And I sleep pretty well. After about two weeks I AI’d it and found that this fatigue is actually one of the side effects of the Adrenal gland waking up among a few others. Also some stiffness in hips first thing in morning but comes and goes through out the day. For me personally I am still able to walk 2 to 4 miles a day and play golf so the soreness /stiffness is acceptable to be off the prednisone. I would say though that new pains in areas, especially if they are debilitating could be PMR, but as I have learned on my own journey and reading many posts on this site, PMR is different for everyone and though we see doctors it is us in control of our body’s. One thing my rheumatologist does check when I see her every 6 months or so is for rheumatoid arthritis due to some issues with hands and fingers. So far so good.

Jump to this post

@boo3 Add on to my initial post. After some research here and other places became a bit more educated regarding prednisone and the body’s production of cortisol. Decided to change daily intake of prednisone from 2 one day then 1 the next to 1.5 each day. I was very skeptical that this would make a difference BUT though my slight aches and pains in hips come and go, I have noticed the “I need a nap” all day feeling has subsided. Thinking 21 days on 1.5 and then 1. Keeping fingers crossed. And oh yea a prayer or two!

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salgalincal | @salgalincal | 2 days ago

I have experienced the overwhelming fatigue while tapering. After 3 years since original PMR diagnosis, it’s taken lots of patience and some setbacks in trying to get off the prednisone. Currently alternating with 2mg/1.5mg. My rheumatologist believes I’ll be continuing the methotrexate for possibly the long term. She increased my daily folic acid to 3 grams for the fatigue and it has helped. Asking if any others have remained on MTZ after getting weaned off the prednisone and for how long. Also if anyone else has had the folic acid increased.
Now that Winter has passed it seems to help as well with keeping a positive attitude. Have kept up with exercise throughout this ordeal and hope to be done with prednisone for good in the near future. Slow and steady is key.

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1 reply
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vjm0223 | @vjm0223 | 2 days ago

I think I posted this a while back. In case you didn’t see it, this may be helpful.
https://canadiancentreforaddictions.org/prednisone-withdrawal/

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4 replies
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dswilson913 | @dswilson913 | 1 day ago
In reply to @vjm0223 "I think I posted this a while back. In case you didn’t see it, this may..." + (show)
Profile picture for vjm0223 @vjm0223

I think I posted this a while back. In case you didn’t see it, this may be helpful.
https://canadiancentreforaddictions.org/prednisone-withdrawal/

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@vjm0223 Thank you this was extremely helpful. It is tempting to stop taking prednisone when the original disease is controlled. The fatigue and brain fog are the worst.

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1 reply
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salgalincal | @salgalincal | 1 day ago
In reply to @salgalincal "I have experienced the overwhelming fatigue while tapering. After 3 years since original PMR diagnosis, it’s..." + (show)
Profile picture for salgalincal @salgalincal

I have experienced the overwhelming fatigue while tapering. After 3 years since original PMR diagnosis, it’s taken lots of patience and some setbacks in trying to get off the prednisone. Currently alternating with 2mg/1.5mg. My rheumatologist believes I’ll be continuing the methotrexate for possibly the long term. She increased my daily folic acid to 3 grams for the fatigue and it has helped. Asking if any others have remained on MTZ after getting weaned off the prednisone and for how long. Also if anyone else has had the folic acid increased.
Now that Winter has passed it seems to help as well with keeping a positive attitude. Have kept up with exercise throughout this ordeal and hope to be done with prednisone for good in the near future. Slow and steady is key.

Jump to this post

@salgalincal

My typo…that was 3mg of folic acid. Not 3 grams!

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salgalincal | @salgalincal | 1 day ago
In reply to @vjm0223 "I think I posted this a while back. In case you didn’t see it, this may..." + (show)
Profile picture for vjm0223 @vjm0223

I think I posted this a while back. In case you didn’t see it, this may be helpful.
https://canadiancentreforaddictions.org/prednisone-withdrawal/

Jump to this post

@vjm0223
Thank you!! This has been the most helpful information yet for understanding the final phase of getting off prednisone. Makes me realize how little support my rheumatologist has given me when it comes to this. This Mayo Clinic site is priceless!

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