Polymyalgia rheumatica

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

@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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My name is John and I woke up one morning 7 years ago with terrible, neck and shoulder pain. My MRI's show some arthritis at C1, and degeneration from C2 down to T1. I have had botox injects, nerve ablations, steroid shots, etc. The pain doctors I see are at a complete loss as to what is wrong. They tried sending me to Cleveland Clinic but they refuse to see chronic pain patients. I ended up going to Mayo in Florida a few years ago, they were just as puzzled as my pain doctors, and were unable to help. I recently went through stem cell injections and they didn't help with the pain or mobility either. The doctor is now thinking it is an immune system disorder as I have Psoriasis. If you don't mind me asking, how long were you in pain before you were diagnosed? And what were the onset of your symptoms

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My symptoms are as follows:
– Pain in left occipital
– Spasms in right scalenes
– Pain in my left upper trapezius
– Pain in my left eye
– Ringing in my left ear
– Pain in left ear

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@digregorioj

My name is John and I woke up one morning 7 years ago with terrible, neck and shoulder pain. My MRI's show some arthritis at C1, and degeneration from C2 down to T1. I have had botox injects, nerve ablations, steroid shots, etc. The pain doctors I see are at a complete loss as to what is wrong. They tried sending me to Cleveland Clinic but they refuse to see chronic pain patients. I ended up going to Mayo in Florida a few years ago, they were just as puzzled as my pain doctors, and were unable to help. I recently went through stem cell injections and they didn't help with the pain or mobility either. The doctor is now thinking it is an immune system disorder as I have Psoriasis. If you don't mind me asking, how long were you in pain before you were diagnosed? And what were the onset of your symptoms

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Hi John @digregorioj, welcome to Mayo Clinic Connect. Thank you for the private message. I thought I would answer you here in the discussion since you posted your symptoms. I went for almost 2 months before I went to my primary care doctor who then sent me to see a rheumatologist after my appointment/exam by him. It started with some unrelated issues (gout in right foot and swollen knee) and just got worse until I could barely walk and had extreme pain in my shoulder, arms, hand and legs which is when I went to the doctor. That was my first bout with polymyalgia rheumatica (PMR) back in 2007. I was treated with 20 mg prednisone dosage which got rid of the pain the same day. They also withdrew some fluid from my knee and gave me a steroid shot for the knee problem. I was able to taper off the prednisone after 3 years when the PMR with into remission.

I have since been diagnosed with osteopenia, idiopathic small fiber peripheral neuropathy (no pain, just numbness in the feet to above the ankles), lymphedema and sleep apnea. I also have advanced degenerative arthritis in my knee joints.

@digregorioj, have you have seen a rheumatologist?

Here is another discussion I would recommend reading…

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@johnbishop

Hi John @digregorioj, welcome to Mayo Clinic Connect. Thank you for the private message. I thought I would answer you here in the discussion since you posted your symptoms. I went for almost 2 months before I went to my primary care doctor who then sent me to see a rheumatologist after my appointment/exam by him. It started with some unrelated issues (gout in right foot and swollen knee) and just got worse until I could barely walk and had extreme pain in my shoulder, arms, hand and legs which is when I went to the doctor. That was my first bout with polymyalgia rheumatica (PMR) back in 2007. I was treated with 20 mg prednisone dosage which got rid of the pain the same day. They also withdrew some fluid from my knee and gave me a steroid shot for the knee problem. I was able to taper off the prednisone after 3 years when the PMR with into remission.

I have since been diagnosed with osteopenia, idiopathic small fiber peripheral neuropathy (no pain, just numbness in the feet to above the ankles), lymphedema and sleep apnea. I also have advanced degenerative arthritis in my knee joints.

@digregorioj, have you have seen a rheumatologist?

Here is another discussion I would recommend reading…

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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Hi John,

Thanks for the response. I haven't seen a rheumatologist yet. The one my pain doctor wants me to see is booked out until September. I was curious to know how this started for other people. I woke up seven years ago with my neck, shoulders, and face in spasm, and no one can seem to figure out why. The pain doctor thinks it is immune system related as the pain increases a few times a year.

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@digregorioj

Hi John,

Thanks for the response. I haven't seen a rheumatologist yet. The one my pain doctor wants me to see is booked out until September. I was curious to know how this started for other people. I woke up seven years ago with my neck, shoulders, and face in spasm, and no one can seem to figure out why. The pain doctor thinks it is immune system related as the pain increases a few times a year.

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Hi John, I don't think anyone knows for sure what causes PMR. The Arthritis Foundation has some pretty good information on PMR.

https://www.arthritis.org/about-arthritis/types/polymyalgia-rheumatica/

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@johnbishop

Hi John, I don't think anyone knows for sure what causes PMR. The Arthritis Foundation has some pretty good information on PMR.

https://www.arthritis.org/about-arthritis/types/polymyalgia-rheumatica/

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Thanks for the link – I have been googling for a few days. Mine started after having mono 7 years ago and has never gone away. I have probably seen no less than 20 doctors and none of them can figure it out. Looking at some of the onset symptoms, they describe what happened to me pretty well, sudden onset of pain, lost 30 pounds in two months, etc. I am truing to find a good rheumatologist in the Fort Myers FL area

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@digregorioj

Thanks for the link – I have been googling for a few days. Mine started after having mono 7 years ago and has never gone away. I have probably seen no less than 20 doctors and none of them can figure it out. Looking at some of the onset symptoms, they describe what happened to me pretty well, sudden onset of pain, lost 30 pounds in two months, etc. I am truing to find a good rheumatologist in the Fort Myers FL area

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If Jacksonville is not too far for you to go, the Mayo Clinic Campus there would be a good choice to find a rheumatologist. The
contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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I have symptoms return when I go below 10mg of prednisone. I drank wine just about every night when I was taking prednisone. A glass (or 2) helped me to relax. I also don't do well with pain pills. They made my stomach hurt or made me nauseas. I agree if you can get in with Mayo Jax, they are great. I have a fabulous rheymatologist and cardiologist there.

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I have had PMR for the past 2 1/2 years. When I was diagnosed I couldn't hardly walk into the doctors office. I had a ESR number of over 80. They prescribed my a very high dose of prednisone ( 80 MG) which helped get me out of the extreme pain. I have since been on a long journey of tapering down on the prednisone. Every time I get too low I flare right back up. They have tried to team the prednisone with methotrexate but no help. I have tried Embrel and Humaria but no help either. I am now on Orencia to help me get down on the prednisone. I have only been on the Orencia for three weeks so we are waiting to see what the blood work looks like next week. They tell me it may take awhile. I have such extreme pain in my hips/shoulders and knee. They have run many tests and say it is PMR. Ugh I must have the most stubborn case of PMR ever. I am only 53 years old( female) and was always so active. This thing is has stopped me in my tracks. I am a teacher and have went to part-time, but now considering retiring because the pain is just a lot. Is there anyone else out there with a similar journey. Are there any other treatments out there that have proved to be beneficial for PMR.

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Hi @sammiesarah, welcome to Connect. My PMR is currently in remission and I've had 2 occurrences of PMR. The first one lasted 3 years and I felt a little like you although your's is definitely worse than what mine was. A 20 mg dosage of prednisone made my pain go away but I struggled tapering down and if I did it too quickly it reared it's ugly head back up and the pain was bad.

What type of tapering schedule were you using? I worked closely using recommendations by my Mayo rheumatologist who told me about one of his patients that took 1/2 mg for a year going back and forth every few weeks from 1/2 mg to zero until he was able to stop taking it with minimal pain. For me, I had to go between 1/2 mg and 1 mg for about six months before I was able to taper off of prednisone.

Diet may also play a part in helping with PMR. Here's some information about it. I now try to stay away from most if not all processed foods. I still have my days though ☺

What to eat if you have polymyalgia rheumatica
https://www.medicalnewstoday.com/articles/321683.php

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