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

Joint pain Started with Arthritis in knee- osteoarthritis- then after COVID vaccine in 2021 BAD joints pain - eventually all over!
Norco helps with pain but barely can walk with overall joint pain!
Any suggestions??
Doctors say it’s Neuropathy and no cure!’
Any suggestions? HELP!?! Thanks Felicia2

John
My PMR appears to be back after 5 years according to my rheumatologist. I was started on 20. can you tell me the best time of day to take the Prednisone, also will the prednisone raise my blood pressure. I won't see my rheumatologist for a month to get more questions answered.

I am currently on Enbrel for me it has worked the best. I have had Humira prior to Enbrel and it quit working. I stayed with Remicaid and Methotrexate. Never any side effects they just eventually stop working. My concern is Iritis and what will keep that under control. Although if I am stuck with steroids for awhile for PMR guess it should stay at bay.

Had my first visit with my rheummy after being diagnosed in December. I see him anyway every 3 mos for AS .
My bloodwork looks good it never showed inflammation but I am already on meds to control AS inflammation.
He recommended that I stay at 7.5mg or below (started at 5mg) to avoid bone loss specifically and other side effects. Continue with maintaining lifestyle management exercise, PT, diet, acupuncture and I also do Float Therapy.
He said try mixing in 7.5mg and 5mg (i.e. 2 days 7.5, 1 day 5, 2 days 7.5, etc). Find the mix that works at the lowest dose I can tolerate symptoms.
I always took my whole dose at 2amish.
I just started splitting my dose 7.5mg (5mg at 2a and 2.5mg at 2p) bc by 6p I was losing steam and feeling symptoms then going to bed by like 8:30p.
I still work so it throws off my rhythm.
That is my latest and greatest on this PMR journey…

@alanbruce sharing with you….has worked for some on this forum. My self included…
https://www.hcplive.com/view/nighttime-prednisone-could-address-morning-stiffness-ra

I have really been having a rough time over the last three months. First PMR emerged at the end of a really bad flu right before Christmas. . Couldn’t walk. All the pain and stiffness located in my thighs, hips, and lower back. Was originally put on 40mg of pred which really helped. Now down to 20 mg of prednisone, but this pain and stiffness it’s not resolved. Knocks the edge off and I get a couple of hours in the middle of the day where things are reasonable. The rheumatologist continues to question the PMR diagnosis and is digging into other things. The other thing that happened six weeks ago is that I fell out in the floor at 3 AM and ended up in the hospital with a saddle pulmonary embolism. Other clots in my lungs and in my left leg. My hematologist believes that the prednisone was partly responsible for the blood clots. Along with other inflammatory events like the flu and PMR, and long Covid. And a long drive. Rheumatologist is now back to testing for different things, but I may move to methotrexate this week. All very frustrating.

Hoping that they find the correct diagnosis and treatment for you soon… to bring you back to functioning as you wish. Sorry that you have to experience this….

I have had high monocytes on my labs for awhile and no docs (neither primary or rheumy ) have remarked on them. Now I have an oncologist since I have been diagnosed with breast cancer and he is sending me for a liver scan after having a bone marrow biopsy. No results yet. Thinks CMML (type of Leukemia). Found this on PubMed:
Myelodysplastic syndrome and autoimmune disorders: two sides of the same coin?
So, I would say to those of you that notice high monocytes on your labs, ask some questions and don't take for granted that it isn't important just because no one speaks up. It may or may not be. Best to check on it.

Do you mean high within range or out of the range altogether? Glad you are getting the care you should now.

I mean high out of range. Range seems to be in the hundreds. Mine started at 1000+ and are now at 2500.