Diagnosed with PMR 2 1/2 years ago. How do I manage the extreme pain?

Posted by sallyann @sallyann, May 10, 2016

I was diagnosed with PMR 2 1/2 years ago. Steroids didn’t help now I’m on Methotrexate for a month. My EMG today was negative. I take Tramodsl, Motrin, and Tylenol to deal w the extreme pain. What do I do next? I’m 54 now.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) group.

@charlena

My husband has been diagnosed as having polymylagia rheumatica (from symptoms alone, no muscle biopsy has been done to date). He has been prescribed 5 mg. prednisone bid. His doc has wanted him to try and gradually reduce the dosage which he has tried to do but after just one missed dose the pain returns.
He has now been on the prednisone over one year. More recently, he was prescribed Chloroquine, which he took approximately one week and had to discontinue due to side effects. I would like to hear from others on how they were diagnosed with PMR and if anyone else has been on prednisone this long and what other medications have been prescribed. Thank you.

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I suddenly developed PMR and was put on 5mg steroids, which worked for a
while, but then relapsed and was sent to a consultant who put me on 20mg
and then gradually reduced the dosage over a period of a year. This worked
well and I am now clear for the past two years T.G. I hope ethis healpful.
Good Luck.

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I have and am experiencing these same symptom logy plus those of LG cell artritis. There are also sle, pyruvate something, adult polyglucan body disorder. These all in addition to everything else I’m suffering from at a pain level range of 5 to 10 constantly.

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I just been diagnosed and they put me on steroids. I just would like to find someone who knows about it or had it a while. I want to kinda know what to expect. Thank you!

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@jchatchett

I just been diagnosed and they put me on steroids. I just would like to find someone who knows about it or had it a while. I want to kinda know what to expect. Thank you!

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I was diagnosed with PMR in early 2007 and was on prednisone (20 mg daily) for 3 years until I was finally able to get off of it gradually in 2010 when my PMR went into remission. Prednisone was a magic pill but it does have some side effects – the only one that bothered me was the weight gain. I think it increases your appetite. Unfortunately my PMR reared it’s ugly head again about three weeks ago so I recently started back on prednisone. I do think diet may play an important part of autoimmune diseases after reading a book – Wahls Protocol by Dr. Terry Wahls. http://terrywahls.com/about/about-terry-wahls/. I just try to stay close to the basic part of the diet – no gluten, no dairy, no sugar or processed foods. I do fudge a little but I figure any reduction of the gluten, sugar and processed foods is better for you. I’m also dealing with small fiber peripheral neuropathy which was diagnosed in March but I’ve had more than 15+ years just never bothered to get it diagnosed because I was always told if they find you have nerve damage there’s nothing they can do about it. This has been an interesting year and the one thing I have learned is you have to be your own advocate and while there may be no one thing that helps with your symptoms you just need to keep looking at finding something that will work of you. Hoping you are able to get your PMR under control as I know how much it hurts. Good luck!

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Hi @jchatchett, and welcome to Connect! I moved your message over to this existing thread on PMR. You’ll find several members are discussing their experiences and sharing advice. All, please meet, and join me in welcoming, @jchatchett! Additionally, I’d like to encourage @grandmajan and@jasonkwells to join the conversation.

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@alysebrunella

Hi @jchatchett, and welcome to Connect! I moved your message over to this existing thread on PMR. You’ll find several members are discussing their experiences and sharing advice. All, please meet, and join me in welcoming, @jchatchett! Additionally, I’d like to encourage @grandmajan and@jasonkwells to join the conversation.

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My husband was diagnosed last year with PMR. He is on prednisone 5 mg bid. This is the only thing that gives him any relief from the pain. His doctor has tried reducing the dosage, but the pain comes back within 24 hours of reducing dosage. Others in this group have mentioned they had to take the prednisone several years before they could reduce the dosage without pain recurring. My husband has not experienced weight gain but I can see a change in his personality. He does stretching exercises which gives him a little relief from the pain. I hope you are able to find the right meds that will help with your pain. Good luck.

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@johnbishop

Hi @charlena and @colleenyoung, I was on prednisone for a couple of years before I was able to get off. My Mayo rheumatologist had me gradually reduce the dosage using a titration schedule. I was on a 20 mg dosage daily and would reduce the dosage by half every week…or tried to reduce it. If the pain came back I would go back to the previous dosage. When I finally got to 1 mg dosage I think it took me several months to cut that to .5 mg daily and was on and off that several times before finally being able to go off completely. I would discuss a plan with your husbands rheumatologist to get off. The good news if there is any, is that the 5 mg is a really low dosage. Biggest struggle I had with prednisone is the weight gain and trying to keep my weight down. As far as managing the disease I’m beginning to think that diet may play a big part in a lot of autoimmune diseases. I’m currently trying to follow the basic Wahls Protocol Diet to see if it will help with my PN in my feet and legs. I’ve been on the diet for about 3 weeks so far and have managed to lose a little over 10 pounds. If you want to read about it you can find out more info on her website – http://www.terrywahls.com/. She is a doctor in Iowa and has an amazing story to tell about her own struggle with MS and the research she has done. Good luck and stay proactive!

Another thing you might want to discuss with your doctor or rheumatologist is some genetic testing to determine which medications may work best for you based on genetic testing. There has been talk about this in a Facebook group I am a member of – Our Neuropathy Friends. You can find information on this website for both patient and doctors – http://genelex.com/youscript/

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I just received my diagnosis and went to the rheumatologist. I am on Predisone 20 for 4 weeks and I’m losing weight. My face and neck looks fuller. The pain is better but not gone. I guess you never get rid of all the pain. I try to eat small meals during the day. I can’t take anti inflammatory because I lost one kidney and my other one is 3/4 %. He did give me a shot in my hip, I go back in 2 weeks and I will see if he will inject my hip on the other side. It really helped.

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@alysebrunella

Hi @jchatchett, and welcome to Connect! I moved your message over to this existing thread on PMR. You’ll find several members are discussing their experiences and sharing advice. All, please meet, and join me in welcoming, @jchatchett! Additionally, I’d like to encourage @grandmajan and@jasonkwells to join the conversation.

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Hi got your email about your husband. So sorry. This disease isn’t for the faint of heart.
As for my treatment I take a cortisone shot occasionally. Used to take one every 8 weeks but haven’t had one since September but having a flare up now.
Also I used to take methotrexate (small dose). And tramadal for pain.
I’ve had PMR for 5 years. It’s not as severe but rears its ugly grad occasionally. Ps aspirin helps much more than IBPROVEN or Tylenol. Best wishes.

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Welcome back to Connect, @nancestl! It is great to have members return to the community to help new members. I encourage you not only to read this discussion, but also to explore the new look and groups on Mayo Clinic Connect https://connect.mayoclinic.org/.

Great to hear that you require less medication to manage PMR. Have you made lifestyle changes that help reduce the frequency of flare-ups?

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Well after my previous posts, unfortunately my PMR came back in the past few weeks and I am back on 20 mg of prednisone. I’m hoping I don’t have to take it more than a few months and after awhile the PMR will go back into remission for another 6 years. I am still having some pain in my wrists with the same dosage of prednisone that was a magic pill with my first bout of PMR but I think it is because I have carpal tunnel in both wrists. I have an appointment setup to get another evaluation and possible nerve test in the hands. Still feeling blessed to have had the PMR in remission for the 6 years and only numbness in my legs and feet with the SFPN.

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Hey John, sorry to hear about the recurrence! I know it can be a punch in the gut. I bet @nancestl and @charlena know a thing or two about such set backs. I’ll be interested in hearing about the results of the evaluation and tests. Fingers crossed that the prednisone kicks in.

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@colleenyoung

Hey John, sorry to hear about the recurrence! I know it can be a punch in the gut. I bet @nancestl and @charlena know a thing or two about such set backs. I’ll be interested in hearing about the results of the evaluation and tests. Fingers crossed that the prednisone kicks in.

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Thanks Colleen. I will try to remember to provide an update after I meet with the doctor next Friday. She used me for a mini training session with several interns to show them what ‘classic’ PMR looks like and how to test for it which did provide a laugh or two on my part. Mayo Kasson Clinic has some great doctors & interns plus a good fall back in Rochester with all the specialists.

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