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sallyann
@sallyann

Posts: 1
Joined: May 10, 2016

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

Posted by @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.

Liked by Dee

REPLY

Hi @sallyann, and welcome to Connect.
I found some information from Mayo Clinic on lifestyle and home remedies for PMR (http://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/basics/lifestyle-home-remedies/con-20023162). How do you manage your PMR beyond your medications?

I’m tagging @johnbishop and @nancestl, two members who have recently discussed their experience with PMR on Connect. I’m also tagging @emmur16 and @luludavis as these members wrote about taking Methotrexate. I hope these members are able to provide you with tips and advice related to your question of “what do I do next?”.

Hi @julied838, I too am new to taking methotrexate injections and take 1 mg folic acid daily. I’ve had gas and bloating and bouts of uc coming back. I found some foods trigger or worsen the nausea such as corn and my beloved green tea latte with almond milk so for now I’ve given these foods up hoping things will calm down. Hang in there and keep searching for options for me the side affects are becoming less of a problem. The mouth sores, rinse with hot salt water morning and night. I hope this is somewhat helpful.

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.

Hi @charlena, and welcome to Connect.
I moved your message to this discussion thread so that you can connect with other members who have been talking about polymyalgia rheumatica. Please meet @sherw @Robert43DAP @kiltlady @selrahc and @sallyann. @cyndee and @nancestl also talk about their experiences here https://connect.mayoclinic.org/discussion/pmr-is-my-new-diagnosis/

@johnbishop I’m wondering if you have any thoughts to share with Charlena about reducing prednisone and managing polymylagia rheumatica?

Charlena, how long has your husband been managing PMR?

@colleenyoung

Hi @charlena, and welcome to Connect.
I moved your message to this discussion thread so that you can connect with other members who have been talking about polymyalgia rheumatica. Please meet @sherw @Robert43DAP @kiltlady @selrahc and @sallyann. @cyndee and @nancestl also talk about their experiences here https://connect.mayoclinic.org/discussion/pmr-is-my-new-diagnosis/

@johnbishop I’m wondering if you have any thoughts to share with Charlena about reducing prednisone and managing polymylagia rheumatica?

Charlena, how long has your husband been managing PMR?

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He has been struggling for quite some time with symptoms, but was diagnosed approximately one year ago and prescribed Prednisone.

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/

Hi @charlena, my memory is not as good as I thought. I was diagnosed with PMR in Jan 2007 (age 62). When I finally decided to go to the doctor I was barely able to walk and could not drive (stubborn man). After the Mayo rheumatologist prescribed the 20 mg dosage of prednisone at an early morning appointment, I had it filled at the clinic and I took 20 mg tablet. I had an afternoon appointment and was able to walk OK without a walker which amazed me. So it was the miracle drug for me. After six or so months the rheumatologist had me gradually reduce the dosage on a 3 day regimen by 1 mg every three days. He had me write down how I felt after each dosage change. If I still had pain, I went back on the previous dosage for 3 days until I was able to lower it without pain. This was a 2+ year journey to get off of prednisone. I looked at my notes and it looks like it took me several months of going between 1 and 1/2 mg until finally stopped taking it and the pain was gone. I still have stiffness and joint pain but since I’m 73 now I figure that’s just part of aging and I try to stay as active as I can. What works for me is a recumbent stationary bicycle which I ride for 30 minutes each morning 4 to 5 days a week. I still have problems walking but I try to take it a day at a time.

The prednisone seems to be the “miracle” drug for my husband as well. He, like you, felt better by the same evening he started taking it. However, his rheumatologist has tried reducing the dose several times and it only takes 1 missed dose for him to tell a huge difference . . . .(he takes 5 mg bid). At his last appointment as the doctor was discussing his PMR and medication he said, “if that’s really what you have”, which didn’t go over well with us. The doctor keeps mentioning a muscle biopsy but hasn’t ordered one. He did have an MRI which was supposedly unremarkable. . .

@charlena

The prednisone seems to be the “miracle” drug for my husband as well. He, like you, felt better by the same evening he started taking it. However, his rheumatologist has tried reducing the dose several times and it only takes 1 missed dose for him to tell a huge difference . . . .(he takes 5 mg bid). At his last appointment as the doctor was discussing his PMR and medication he said, “if that’s really what you have”, which didn’t go over well with us. The doctor keeps mentioning a muscle biopsy but hasn’t ordered one. He did have an MRI which was supposedly unremarkable. . .

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I wouldn’t give up on trying to reduce the prednisone dosage. My rheumatologist told me he had another patient that was on 1/2 mg a day and every time he tried to quit the pain came back. He said it was almost a year before he was finally able to stop taking the drug. Sounds like your doctor does not have much knowledge on PMR and how it affects people, otherwise he wouldn’t have made such a stupid statement. I would trust your rheumatologist on the diagnosis more than a regular family doctor who I’m guessing has not seen a lot of patients with arthritis and does not specialize in the condition. Keep asking questions and if you are not comfortable with the doctor I would ask to see someone else if possible.

@charlena

The prednisone seems to be the “miracle” drug for my husband as well. He, like you, felt better by the same evening he started taking it. However, his rheumatologist has tried reducing the dose several times and it only takes 1 missed dose for him to tell a huge difference . . . .(he takes 5 mg bid). At his last appointment as the doctor was discussing his PMR and medication he said, “if that’s really what you have”, which didn’t go over well with us. The doctor keeps mentioning a muscle biopsy but hasn’t ordered one. He did have an MRI which was supposedly unremarkable. . .

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Thank you, John, for your response. Actually, it was his current rheumatologist that made that statement. And, he is the 4th rheumatologist my husband has seen. The other three made no effort whatsoever to diagnose him only did bloodwork and then said they just didn’t know what was wrong with him. We didn’t realize it might be years of his taking the prednisone. I think a muscle biopsy might be in order, but that brings on another set of issues for him.

@charlena

The prednisone seems to be the “miracle” drug for my husband as well. He, like you, felt better by the same evening he started taking it. However, his rheumatologist has tried reducing the dose several times and it only takes 1 missed dose for him to tell a huge difference . . . .(he takes 5 mg bid). At his last appointment as the doctor was discussing his PMR and medication he said, “if that’s really what you have”, which didn’t go over well with us. The doctor keeps mentioning a muscle biopsy but hasn’t ordered one. He did have an MRI which was supposedly unremarkable. . .

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I guess I was fortunate with the rheumatologist I had at the Rochester Mayo Clinic, Dr. Thomas Osborn. I think he is/was one of their top ones, or at least had the most experience with seniors. Plus he had empathy which made me feel a lot better that he cared about his patients. I will keep you in my prayers hoping you find an answer that will help your husband.

Thank you, John. Actually, two of the rheumatologists are at well-know hospitals, not Mayo though. We are very lucky to have excellent doctors at Emory, with the exception of the rheumatologist. He also has doctors at Vanderbilt. We do not use any local doctors as they seem not to be able to diagnose or treat my husband. Again, John, thank you for your responses and prayers.

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@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.

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.

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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