How to address PMR pain while decreasing prednisone

Posted by barbararene @barbararene, Feb 13, 2017

I have been diagnosed w poly myalgia rheumatica (pmr). Am taking 5 mg of predisone, was taking 10mg.
Every time I go on a low dose, symptoms come back. I can't take pain meds, but do drink wine to ease pain, although I'm told no alcohol w prednisone. Anything you can share as far as info

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@anniegal

I am wondering if others have had a missed dx of PMR and if so, for how long? l have recently been diagnosed by a top rheumatologist as having PMR despite normal labs. I have had crippling pain for years. I was told over and over again by other doctors it could not be PMR because my SED rate and C Reactive Protein results were normal. Dx’ed Graves in 1993, fibromyalgia 1996.
Prednisone feels like a get out of jail card. Started 2/14/2019. Now at eleven mg.

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I was dx with RA in 2011 and PMR in December on 2018. I also have normal SED and C reactive protein. I started on 20 mg prednisone with almost immediate pain relief. I am down to 7.g at this time.

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@anniegal

I am wondering if others have had a missed dx of PMR and if so, for how long? l have recently been diagnosed by a top rheumatologist as having PMR despite normal labs. I have had crippling pain for years. I was told over and over again by other doctors it could not be PMR because my SED rate and C Reactive Protein results were normal. Dx’ed Graves in 1993, fibromyalgia 1996.
Prednisone feels like a get out of jail card. Started 2/14/2019. Now at eleven mg.

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@anniegal Welcome to connect I was told years ago I had RA but Dr here says my C reactive ct and sed rate are normal Im seeing s new rheumatologist and will talk to him about this

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@lioness

@anniegal Welcome to connect I was told years ago I had RA but Dr here says my C reactive ct and sed rate are normal Im seeing s new rheumatologist and will talk to him about this

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Hi Annie, thanks for your welcome. A 2nd or 3rd opinion is a good idea. I was lucky to have been able to see this new Dr who diagnosed me with Sjogren's Syndrome, the "dry eye, dry mouth" disorder. On the 24th of April I return to visit this new Doc, as well as a Rheumatologist. My current pulmonologist folded his arms and crossed his legs and said, "I don't know what's wrong with you." Great. Stay on 40 mg Prednisone. That was Sept 11, 2018. Was having very much difficulty with my breathing, I was gasping like a fish out of water after climbing 1 slight of stairs. He kept telling me to hang tight, do another CT Scan in 2 months. In the meantime, I was having pretty low O2 sat rates. I will probably ask the Pulm why he didn't run more tests, etc. to TRY to find out what is wrong with me. This could have been done last fall. I see $$ signs all over.

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@lioness

@anniegal Welcome to connect I was told years ago I had RA but Dr here says my C reactive ct and sed rate are normal Im seeing s new rheumatologist and will talk to him about this

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Is this Ed Wright stay up with polymyalgia rheumatica? My husband's is normal.

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@dixiebell

Is this Ed Wright stay up with polymyalgia rheumatica? My husband's is normal.

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Sed rate, oops

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@suziropiequet

Hi Annie, thanks for your welcome. A 2nd or 3rd opinion is a good idea. I was lucky to have been able to see this new Dr who diagnosed me with Sjogren's Syndrome, the "dry eye, dry mouth" disorder. On the 24th of April I return to visit this new Doc, as well as a Rheumatologist. My current pulmonologist folded his arms and crossed his legs and said, "I don't know what's wrong with you." Great. Stay on 40 mg Prednisone. That was Sept 11, 2018. Was having very much difficulty with my breathing, I was gasping like a fish out of water after climbing 1 slight of stairs. He kept telling me to hang tight, do another CT Scan in 2 months. In the meantime, I was having pretty low O2 sat rates. I will probably ask the Pulm why he didn't run more tests, etc. to TRY to find out what is wrong with me. This could have been done last fall. I see $$ signs all over.

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@suziropiequet Hi Suzi, there was something that I read in your post that said you were having difficulty breathing, can I ask you if this was because of your condition or after you started on Prednisone. I get very out of breath also when climbing and sometimes just walking causes it. Was wondering if this is also a side affect of Prednisone...and also if anyone else has this? Would appreciate any feedback.

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Yes it affected me in that manner. Now I am down to 4mg per day and am doing much, much better.

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@noosat1

Yes it affected me in that manner. Now I am down to 4mg per day and am doing much, much better.

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@noosat1 - thank you for your reply, yes I also am on 4mg but still very puffed so will mention to my doctor at next visit.

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Hi @barbararene I do not have pain in my feet but but in my shoulders and hips. I find that my symptoms flare up sometimes for a few days and as I keep a diary I can see what may have caused it. Stress is the main thing and my symptoms can last a week or more before they settle again. I also am on 4 mg and when I lowered my dose to this have had nearly 2 weeks of increased pain, but slowly it has reduced and Im feeling better. Not 100% but hopefully it will stay like this so I can lower my dose again in a few weeks. I usually have a return of symptoms when I lower my dose but wait to see if my body kicks in and starts taking care of itself... this is usually the case with me but we are not all the same. Most of the time I have stiffness in my shoulder area and some days are worse than others but if its bearable I try to wait it out to see if it settles. Good luck and I hope your pain settles down for you.

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@lindapc

@noosat1 - thank you for your reply, yes I also am on 4mg but still very puffed so will mention to my doctor at next visit.

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@linpac thats a side effect Steriods will make you look puffy

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