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

If you see Dr Stone tell him that someone in Iowa said thank-you.

The GiACTA study gave my rheumatologist the idea to try Actemra. It worked for me. After failing for 12 years to taper off prednisone, I was able to taper off in less than a year after Actemra was started.

I have been off prednisone for 2 years and counting. I have no side effects from Actemra that I'm aware of. My rheumatologist thinks Actemra is better than long term prednisone. I would agree but I would like to be off Actemra too.

Made it through the weekend and still no recurrence of symptoms, going on almost 2 weeks with the 20 mg in the morning, 10 mg at night. My rheumatologist did recommend Friday that I stay on this dosage for 4 weeks total (~ 2 more weeks) before I try to taper. I think I actually did manage to side-sleep a couple of times this weekend, so I can't feel any better about the state of things now vs 2 weeks ago, when I needed help out of bed. I even pushed a little harder with the yardwork this past weekend and still have had no flare-ups. So fingers crossed that things stay this way for 2 more weeks!

Thank you for sharing! Eleven years ago I woke to horrendous pain. Went to ER and my ESR &CRP were sky high. Put on 40mg prednisone and saw a rhyme dr the next day and up’d me to 60mg. Of course they tittered me down and added pain pills. Six months later U had to compression fractures back and pelvis. Three rhymes later I asked is it possible that I could have SERO NEGATINE RA? The dr says I was just going to talk with you about this, right!?! So now I’m on my 5th Rhuem and went on Remicade infusions. This worked well. Now I also had what was thought to be a bad case of Raynauds. Then the dr changed me to Rituxan Infusion as she thought I had CAD ( Cold agglutinate Disorder). Rituxan is the protocol for that. My research told me I don’t have all the factors for that. With my good insurance I was able to self refer to a Hematologist. After thousands of dollars & tons of tests, I now have type 1 Cryoglobulinemia. Treatment is the same- Rituxan.
What I have learned and My long point is….do your own research, question everything and be your own body’s own advocate!

@slward1951 Your story is just amazing ! Jaw Dropping really - Every recent manuscript I have looked at alludes to this type of nagging issue ( in the PCP or Rhematologist's mind) is that the Dx of PMR is incorrect ! This was one of first papers i looked at and thought the name "familial Mediterranean fever" was very tantalizing !! I also like this Figure 2 because it presents PMR on a SPECTRUM from auto-inflammatory to the (true) autoimmune RDs, with a list of other ailments. There is another reference i have with a Table of PMR- Mimicking-diseases - i can add that later if anyone would like to see .
Floris a, Piga M, Cauli a, et al. Polymyalgia rheumatica: an autoinflammatory
disorder?. RMD Open 2018;4:e000694. doi:10.1136/ rmdopen-2018-000694
What insurance -may I ask ? I posted recently that the financial burden in USA of PMR can be upwards of $20,000.
Thank you for reminding us of the type of diligence to apply to your health!

BTW - for everyone , RITUXAN is a CD20-directed cytolytic antibody ( so against B cells)

Hello @bfh3 -Aha ! you are being advised to do what seems to be described as a " slow "taper - 2.5mg /month ? And yes -my gardening work awaits me !
- Maybe @walkamok can plot our tapering side by side : ) - I have been advised to do the 2.5mg decrease for 30mg to 20mg in steps of 6-7 days - i will do that until i get back to 20 mg -- so by about June 22 when i have another appointment. My response to 30mg was quite remarkable - AND thanks to this forum the SPLIT DOSE WAS key - for my pain scoring at least ! Is there a clinician or SME that can comment on the origin of these two approaches ?? - Thank you !
P.S. Have you seen this :
Rheumatology 2020;59:1906–1915
Longitudinal clusters of pain and stiffness in
polymyalgia rheumatica: 2-year results from the
PMR Cohort Study
Sara Muller -1st author

My name is Cynthia!
How's everyone doing this evening?
I was diagnosed with PMR September 2022.
My personal opinion after phfizer booster May 2022
in late July same year I developed PMR.
This pain and stiffness is something I wouldn't wish on anyway.
Your day to day living is disruptive, sleeping, outings, & etc.
I'm on Prednisone & every time it's reduce to 6mg pain comes back again.
Now my teeth are bothering me. This is new.

How do you all handle this?

Hi Cynthia @juju1, Welcome to Connect. You are not alone with not wishing PMR on anyone. You mentioned being diagnosed Sept 2022 and having pain coming back when you reduce to 6 mg prednisone. Depending on your starting dose, it may be that you are tapering too fast. I started at 20 mg prednisone and the first time it took me 3 and half years to taper off. The last 6 months going back and forth between 1 mg and 1/2 mg until I could finally stop taking prednisone and not have any pain in the morning. There is another discussion you might find helpful.

--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/.

Do you keep a daily log with your level of pain when you wake up and the dosage of prednisone for that day?

my girl- thanks for your reply. I have excellent medical coverage with Regence ($221. month) and Medicare ($231 a month)with no out of pocket costs. COST OF RITUXAN each infusion $14,394. I get infusions every 6 months.
I am hoping with my newest Dx being Cryoglobulinemia & Rituxan being my hematologists go to that it will keep my type 1 ( multiple myeloma or lymphoma) at bay!!

Hello Cynthia! I'm sorry to read that your pain keeps coming back. I only recently was diagnosed with PMR about a month ago. Doctor started me on 20 mg/day for 1 week, then lowered to 15 mg/day for the next week. Pain came back even before I lowered to 15 mg, but I proceeded anyway, only to have the pain worsen to its highest levels (needed help out of bed). Doctor increased me to 20 mg in morning, 10 mg at night about 2 weeks ago, and I've felt almost 100% since then, although the prednisone does seem to wear me out a little. So from my very limited experience, my guess is that maybe your doctor tapered you too soon and/or started you with too low of a dosage. I'd advise your doctor of any flare-ups, so that he/she could determine if you should be restarted at a higher dosage.

I totally agree with you.
My doctor and I are scheduled for Telehealth visit tomorrow morning.
Thank you