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

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?

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.

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.

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.

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.

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

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.

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

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!

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