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

My initial dose last March was 10 mg & is still 10 mg, with 100% relief all along.

I feel for everyone in this group, because I can certainly relate that this is not fun. My story is similar to others, so I will try to keep this short. In 2018 I had my first experience of PMR. I went to 4 to 5 doctors to try to find out what was going on. My first thought was that it had something to do with MS, which I was being treated for since 1998. My Neuro had me have another MRI, which showed no activity related to MS. I saw 4 other doctors which tested me for many things, all showing up as negative. No one was able to tell me what was going on, which had increased to the point of my wife having to help me out of bed every morning. I was not able to see a Rheumatologist in the area; the wait list was over a year. MIL was seeing one, and my wife was taking her to appts. She got a chance to explain to her R-gist what was going on with me. He told her her to set up an appt later that week. Anyway, came to see another R-gist and as I was explaining the situation, he began to get a smile on his face. I asked him why he was smiling, he said "I think I know what it is." He roled off Polymyalgia Rheumatica so quickly, that I has to ask that he slow that down. He then printed off a PMR information sheet. I started reading the symptoms, and was was saying to myself, check, check, check, check... Everything listed was happening to me. Bingo, PMR!!!

Since then, I have had two flares, just coming off my most recent one in July of this year. Pred has worked very very well for me. Follow-up appt with R-gist showed inflammation markers high again. He suggest Methotrexate, which I don't want to do. He said that I could stay on a low dose of pred, which I would prefer. I know that everyone is different, but that is what has worked very well for me, pred. so far that is. I would assume that I would have to do another taper, rather that starting at the 4 to 5 mg dose, but not sure tat this point. Will discuss with R-gist.

Hi @svsmgm07, Welcome to Connect. Each of us are a little different when it comes to tapering off of PMR but what we have in common is tapering slowly is the name of the game to reduce flare ups and managing the PMR pain. There is another discussion you might find helpful:
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/.

I found a daily log to be quite helpful for deciding when I could taper to a lower dose. Do you keep a daily log with your level of pain when you get up in the morning and the dose or prednisone for the day?

Hi @marymckeith, PMR/GCA made me weak. It changed for the better when I went on Prednisone, although, I think that, psychologically, the memory of that weakness created anxiety for me and made me hesitant to do much.
Have you had your vitals checked? After open heart surgery, a year before PMR, I was very weak, due to lack of oxygen.
PMR and GCA can also cause anemia (the anemia of chronic inflammation) and that made me incredibly weak. After walking for an hour, all I could do was collapse on the couch.
Numbness in your face could indicate GCA. Is your scalp tender, do you have headaches, problems with vision, a dry coughetc.?
Was 20 mg the highest dosage of prednisone you've been prescribed?
If you have developed GCA, the dosage is at least double that. I was put on 40 mg prednisone and my weakness, other symptoms resolved.
I wish you the best.

Thanks so much for the information. It helps!

@marymckeith When I contacted my endocrinologist when I was prescribed the prednisone, she adjusted my my insulin levels per the dose. The first month my #s were great, but this last month they have been up and down. Some days I struggle to stay under 200 and then there are days (less frequently) where I stay under 100 and get a lot of low alerts on my CGM. I haven't found any pattern that relates to diet, etc. I started at 20 mg and stepped down to 17.5 (10/morn and 7.5/eve) for the past two weeks. The joint pain has been minimal, at a 1-2 level at worst, mainly in shoulders and wrists. I am getting ready to step down to 15 today. The plan is for 10/morn and 5/eve. I will also be downloading my CGM readings and send to my endo and discuss how best to proceed and adjust my insulin levels. Will let you know how things go!

After about 3 months on prednisone without a return of symptoms, mild tightness in shoulder and neck area returned a couple of weeks ago. I think it started right around when I tapered from 15 mg/day (12.5 in am, 2.5 mg in pm) to 12.5 mg/day (10 in am, 2.5 in pm). Pending feedback from my rheumatologist, I decided to do 10 mg in am, 5 mg in pm as a "stand-by" dosage, since that's about where I was when I last had no symptoms.

For those of you with returning symptoms during the prednisone taper, what "next steps" were recommended for you treatment-wise? Did it include less prednisone plus a "prednisone replacement"?

I'm disappointed that mild symptoms came back before I even got down to 10 mg/day. I suspect there will be a lot of "experimentation" now, which I'm not looking forward to.

Thanks so much. I need all the info I can get. Please let me know how it works out. At the ER because of weakness they said the type 2/diabetic reading wasn't that high but the weakness was profound. Everything else about me has been checked on throughly. I am on 17.5 prednisone but occasionally have to up it a little which I hate to do. You were so nice to respond. Interested you divide the dose between morning and evening. Maybe I should be doing that.

The split dose is against my rheumatologists wishes (actually a demand!), but it works for me. As I mentioned in my original post, when I went to morning only and stepping down from 20 to 17.5, within three days I was in severe pain again, went back to my 10 in the morning and 10 evening and was feeling much better the next morning and my "new normal" after two days. Stepped down to 10/morn and 7.5/eve that last two weeks and feel good enough to step to 10/morn and 5/eve starting today. Still a little leery that the 2.5 step will be a bit much, but will "listen to my body" and see what happens.

Oh, thank you. I will try it starting tomorrow as you did — splitting the dose. Because the 17.5 in the morning isn't doing it. Very painful today. I so much appreciate the help! Much thanks!