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

I too am 78 years old so I appreciate all that you are going through. Do you experience muscle and joint aches in the knees and inner thighs? What exercises help you? Take care

Your story is like mine ! Pain and stiffness in both legs. The rheumatologist in Rochester recommended Cymbalta but I said “no” to that. I will be getting a nerve function test on March 2nd. Who knows what that will or will not show up. I am on hydrocodone for pain but can’t be on that forever. Gradually getting off the prednisone ( at. 6 mg right now) will take 11 more weeks to get completely off. See the originally said my pain was from osteoarthritis in my hips. Then after 18 months of suffering I could no longer walk easily and the diagnosed me with PMR. Now after seven months of prednisone ( the pain came back after I was reduced to 20 mg) now they say they misdiagnosed me again. They think it may be fibromyalgia but I totally disagree as my pain is not all over, just in my legs and hips. That is where they offered me the Cymbalta. No thank you.
I have been seeing a nurse practitioner in a holistic clinic in Burnsville Minnesota. She has been really on top of everything and I think I might be making some headway. She has me on a no sugar, no gluten diet. I am still on dairy for the time being as due to the prednisone I now have substantial thinning of the bone plus osteoarthritis where 18 months ago I only had osteopenia. She changed my thyroid medication from levothyroxine ( T4) to a combination medication of both T4 and T3. I feel a bit more energized. She also gave me a list of supplements which I am slowly incorporating in my diet. Let me know your thoughts about our situation as there must be an answer somewhere for us.

Thank you
I did go to the ER and by the grace of G-D I got a very informed and kind Dr.
He admitted me for a temporal biopsy today and raised my prednisone from 10 mg to 40 mg until
I see my rheumatologist on March 3
( I came to ER mainly because impossible to get an appointment soon with the doctor- so I was afraid to wait) Thanks for your response… I am so grateful and means so much to me

Hi @claude67, I would like to add my welcome to Connect along with @aaroncush. I thought I would respond to you in this PMR discussion so that you can learn what other members have shared.
--- Polymyalgia Rheumatica (PMR): Meet others & Share Your Story:
https://connect.mayoclinic.org/discussion/polymyalgia-rheumatica-pmr-meet-others-share-your-story/.

Both times I had PMR, I was started on 20 mg prednisone which took away the pain shortly after taking my morning dose and kept me pretty much pain free until the next days dose. There is also another discussion which you might find helpful for getting along with PMR.
--- PMR Dosages and Managing Symptoms https://connect.mayoclinic.org/discussion/pmr-dosages/.

Do you mind sharing how much prednisone you were started on?

Hey John, Thanks for the info, I’m taking 40 mg of prednisone a day, they give me five day allotment. I’m glad getting blood work done tomorrow and a wellness check February 28 but I can’t do without the meds too much pain.

Hi @christi48, It must have been unbearable for people before steroids. Prednisone was invented in the 1950s.
PMR and GCA are self limiting diseases. They eventually burn themselves out. With untreated GCA though, one runs the risk of going blind or having a stroke so those of us who have it are truly lucky to be living when prednisone can calm our overactive immune systems.
I had the pain of PMR for a year without being diagnosed and took turmeric, SAME, saffron, etc. I didn't even try Ibuprophen. An infrared heating pad eased the pain when I used it.
My mother in law had GCA and didn't want to take prednisone, but was advised of the consequences of not taking it. When I was finally diagnosed, I knew the drill.
I hope you get off the prednisone as soon as you reasonably can!

Hi @issyb, Can you get a message to the rheumatologist or primary care physician to advise of your new symptoms quickly? A medical textbook I have advises that prednisone be increased in a person exhibiting symptoms of GCA even before a biopsy of the temporal artery is done. When I was first diagnosed with GCA a doctor told me if I had any pain in my eyes or trouble seeing to immediately go to the emergency room.
My mother-in-law had GCA as well and her symptoms were different from mine, so I never imagined I had GCA. I had short stabbing pains on the right side of my face, from the ear to the nose that came and went, a constant stiff neck, and a tender scalp, for a couple of weeks. Also I had some vision problems in my right eye that came and went a couple of times a few months before I was diagnosed.
If you can't get a hold of your doctors, it's probably best with your symptoms to err on the side of caution and go to the emergency room because the consequences of untreated GCA are stroke or blindness. Good luck!

I am thrilled for you that things are working out. If you have any problems with your eyes, get to your Ophthalmalogist immediately. My best to you.

You at least have someone who looks at the whole picture for you. I see my rheumy soon but he is on thin ice with me as he is so uncommunicative. I have an apt for a new one in May. I see my primary soon also and I am going to try to get her to take over my LDN script and weigh in on all of it. I am taking infusion for bone production since the cancer diagnosis. Was on hormones for migraine prevention up until then so bones are good for my age. But of course, they had to go and I worried about that. But increased my calcium channel blocker and I am ok headache-wise. Boy, aren't these body complicated?! Can't do much with diet as I have Crohn's but went no sugar for 6 weeks and it made no difference. (Except weight loss) I'll let you know.

Thank you 🙏 ❤️