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.

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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!

Liked by Dee

REPLY

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.

Liked by Dee

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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.

Liked by Dee

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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?

Liked by Dee

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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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@johnbishop

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 John, I’ve just been diagnosed with PMR and am taking 20 mg prednisone/day. I’ve never heard of this disease, but have had Reflex Sympathetic Dystrophy (which, through a year of intensive excerises, went into remission) and Peripheral Neuropathy which is still present. I notice that you don’t use dairy…I’ve been told to drink milk and eat yogurt when taking the prednisone…no problems to date, but any advice you could give me would be greatly appreciated! Many thanks.

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Hi @dreamer38, welcome to Connect. I did stop using dairy products for a short time but found it wasn't making any difference for me. I also have osteopenia so I'm supposed to take calcium pills but they plug me up pretty bad so I switched to eating more veggies that are high in calcium and drinking fat free milk with my pills. The biggest issue with me taking prednisone was weight gain. My first occurrence of PMR I gained around 40+ pounds. The second time around I was conscious of weight gain so I did more exercise and cut back on the calories by trying to eat healthier. The big no for me was giving up all fast foods. Even with that my weight was up and down weekly 4 to 5 pounds.

The prednisone contributed to the osteopenia so you might want to talk to your doctor about calcium supplement and tapering off of prednisone as soon as you are able. The first occurrence I was on it for 3 years until I was able to taper off with no pain and the PMR went into remission. The second round with PMR was 6 years later and lasted about a year and a half before I was able to taper off.

Has your doctor mentioned trying to taper off yet?

John

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Thanks for replying, John. Can you remember how you coped with the pain when first diagnosed? I’m having an awful time. The pain is so bad, I would really appreciate getting some coping guidelines. I’ve been taking 20 mg prednisone for almost two weeks now. Unfortunately, my doctor is off on holidays for two weeks. Pain seems to lessen in late afternoon/early evening…taking prednisone very early in a.m. as well. Having occipital neuralgia and going to a Pain Clinic for many years, I think my pain tolerance is pretty good! As I said, any help would be great. Am seeing my doc on his return.

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@dreamer38

Thanks for replying, John. Can you remember how you coped with the pain when first diagnosed? I’m having an awful time. The pain is so bad, I would really appreciate getting some coping guidelines. I’ve been taking 20 mg prednisone for almost two weeks now. Unfortunately, my doctor is off on holidays for two weeks. Pain seems to lessen in late afternoon/early evening…taking prednisone very early in a.m. as well. Having occipital neuralgia and going to a Pain Clinic for many years, I think my pain tolerance is pretty good! As I said, any help would be great. Am seeing my doc on his return.

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Hi @dreamer38, when I was first diagnosed with PMR the pain was really bad in my shoulders and arms and a little in my legs but not as bad. The prednisone at my 20 mg dosage pretty much made all of the pain go away for the day and most of the nights until I took the prednisone the next morning. I know that some have found splitting the dosage helped with the evening and nights but I really never had to do that. One thing I think that helped me cope a little better was mild exercise in the morning after the prednisone kicked in. It sounds like the prednisone doesn't start working for you until later in the day/evening even though you take it in the morning?

Here's some ideas that may be helpful:

Coping with PMR and GCA: Hints, tips and strategies
https://www.pmrandgca.org.uk/coping-pmr-and-gca-hints-tips-and-strategies

Also an interesting article on diagnosing PMR here: Polymyalgia rheumatica: Look before you leap
https://bpac.org.nz/BPJ/2013/June/polymyalgia-rheumatica.aspx

I hope you will update us after seeing your doc. It's good for all of us to learn as much as we can about our health issues.

John

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Hi John, thanks for the articles…read both. Hopefully, the 5yr-old one will have changed somewhat!! Yes, I will update you after doc appt. I find one side of body is better, but the lhs, and I’m left handed, stays quite painful and stiff until late afternoon. Am still on 20 mg prednisone and will continue until I next see the doc. Am now taking prednisone at 5:30ish a.m. so as to get relief earlier in the day!

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@johnbishop

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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Hello John it's Beryl……I am so sorry that you have another bout of PMR…..I hope on your behalf that it doesn't last too long…..as for me I just go on and on with this thing and it never seems to go altogether ….have an oppointment at the hospital next Monday ….I don't suppose my Doctor will change anything …..three Mgs a day …..been that way for along time now …..oh well worse trouble at sea as my Mum used to say…….keep smiling …..Beryl

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