Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Hello @becky72, Welcome to Connect. Sorry to hear you have been dealing with the symptoms for so long without being able to see a rheumatologist. You will notice that we moved your post to the following discussion so that you can learn from other members with PMR -- Polymyalgia Rheumatica (PMR): Meet others & Share Your Story: https://connect.mayoclinic.org/discussion/polymyalgia-rheumatica-pmr-meet-others-share-your-story/.

If you click the link above it will take you to the start of the discussion where you can read through to learn what others have shared.

I've had 2 occurrences of PMR. My rheumatologist started me at 20 mg prednisone both times. We are all a little different but my starting dose relieved all of my pain within an hour or so of taking the dose. From what I've read that is basically how they diagnose PMR along with the ESR and CRP tests which for some members have been normal when they had PMR.

I don't think you can cold turkey quit taking prednisone if you take 20 mg for 10 days. I think the average time that it takes for PMR to run it's course from what I've read is 2 to 3 years. My first time took me 3 and half years to taper off and the second time 1 and half years to taper off.

I would definitely reach out to different doctor with more experience with older patients. Have you tried taking 20 mg prednisone to see if your symptoms go away?

Your picture certainly isn't straightforward. My non medical opinion is that the pain is nerve related. Either pinched or shingles, which a whole other category. You seem to be following the right diagnostic path. In the meantime, you might try the otc cream "Voterin" or its generic counterpart. Just be careful to not overuse that shoulder.

Thank you Sue. It's very odd sudden onset pain..clothing hurts..no redness or swelling that I can discern so makes sense that it is nerve pain. The other piece yo this puzzle is I was prescribed 100mg doxycycline as an anti-inflammatory ( even tho it's antibiotic) it is used to try and halt the hair disease and reduce inflammation of ghis scarring alopecia..once the hair gollicle is destroyed it can never grow back as is the case with non starting alopecias. I took the doxycycline on Monday thru Thursday and read it can cause joint shoulder pain parathesias...I'm clueless and just want to be out of pain.. thank you for your kind response and I'll look for this ointment you suggested ..this pain gives the words nerve wracking a whole new meaning..it's so painful ..I'm sorry for all of us on this site..

GM:
After about a month or so of complaining of pain in my face! Then 3 days ago swelling and pain by my temple area. I finally called my Doctor-immediate same day appointment and then blood work. Next morning 5am he had prescribed prednisone 40mg start immediately. Woke this morning 5am again w face pain throbbing- pretty scared rn to be honest - not sure what to to calm the face - i feel like im just waiting for it…Ie to make me go blind! Idk… reading too much on this topic maybe is not so good. No one talks about, things like: when pain comes on should you lie, stand, massage area, excercise, put hot or cold compress,…. Idk. Feel a bit lost with knowing what to do !?? I also had &have chronic bile/ reflux that seemed to start this- for past 2-3 months waking each night because I couldn’t lie down…. Omg…. So Doc put me on acid reducing med. seems a bit better within 2 days! be good to hear of anyone has suggestions for me. Thanks

Be careful of Prednisone as it can deplete bones. Have just found out the hard way, but it doesn't have to happen. Talk to your doctor about this soon, it can be prevented.

Sorry, forgot to introduce myself, so here goes:

My nameis Rosemary, I am 78 and live in Massachusetts. Three years ago I was an active and energetic person, gardening, keeping house, following a heap of hobbies. Then I had a PMR flare up and it all changed. I won’t go into what I experienced as I suspect many of you know. I am now at three and a half years and still experiencing some pain, but feel that I have improved a lot. This forum has put me on some very useful roads of inquiry that are already helping a ton, thank you folks. Now, thanks to the very thing that has saved me (prednisone), I have to combat osteoporosis. I am hoping that this spring I can go back to working on my flower and vegetable garden, which has been neglected all this time. We grow enough vegetables and herbs to last us most of the year as we don’t trust the selection in the supermarket. My husband did his best to hold things together but between helping me, his age, and his own work, it’s been hard for him. We met eleven years ago on Match.com and it was the best thing that ever happened to me. The past years have been a rough ride but he has been beside me all the way.

My name is Richard, I'm 67. I was diagnosed with PMR a year ago after I felt like my upper body was being beat with a 2 X 4 constantly and my lower half was so stiff, I could hardly walk. My family doc ordered the basic rheumatology tests and prescribed 15 mg Prednisone when the results came back with an immune system in overdrive. I got a rheumatologist appointment several months later (in my area, they're few and far between). She kicked me up to 30 mg initially as the 15 wasn't doing the trick. About a month later, she had me start on Plaquenil (Hydroxchloroquine) to enhance the effects of the Prednisone, which still wasn't completely controlling the PMR. Unfortunately, about a week later, I developed the rash from heck from neck to toes. I couldn't really got any assistance from the rheumatologist and gutted out the month it took to get the drug out of my system. I'm waiting for an appointment with a new rheumatologist but that's still not for a few months. I've been gradually reducing my Prednisone in the meantime, I'm down to 5 mg daily. I have aches and pains, some lower body stiffness. I take from 1300 to 2600 mg of Tylenol daily for the pain. I've tried the Autoimmune diet but it had no effect. Some days I have chronic fatigue. I have Smoldering Myeloma also; it's not really known if it is being affected by the PMR or vice versa.

After three years of treatment, I am a female taking 2 mg. of Prednisone daily. I thought I was ready to reduce the dosage to 1 mg; however within days my back was painful and stiff. I went back to 2 mg. and I am very slowly improving.
Very concerned about being on Prednisone long term.
I have regular blood tests and they have been quite good.
I am hoping to learn from others who have taken Prednisone long term.

How are you protecting your bones?

It is worrisome being on prednisone for long periods. I am at 26 months on prednisone and recently had to go up to 3 mg from 1 mg as i became very symptomatic again, and my chemistries were elevated . I was very disappointed by the regression but feel much better at 3 mg and will try tapering again. I am "doing everything right" and felt let down by medicine and my body, but I am learning to trust the process, let go, get on with life, and let this disease burn itself out. This forum and the contributors are a wonderful source of support and information. It has greatly shaped my treatment plan. While everyone's experience is unique, there are so many valuable tidbits to be gleaned from others. Good luck