Connect
Comment receiving replies
@kjoed53 I went to several physicians along the way. Rheumatologist number 1 didn't believe it was PMR and prescribed nothing. I had a pain doctor put me originally on 15mg of Meloxicam, but I was still experiencing pain.
Rheumatologist number 2 prescribed me 15 mg of Prednisone. She didn't believe it was PMR, but I convinced her with my data from Chat GPT to start treating it. Eventually, that didn't sit well with me, working with a doctor who was just listening to what I want and clearly didn't understand PMR.
Rheumatologist number 3 wanted to get a true diagnosis and wanted to have me completely and somewhat aggressively taper off Prednisone while he prescribed 75mg Diclofenac Sodium. Once I was tapered off the Prednisone for 2 weeks he tested my blood and since my blood values showed limited inflammation he assumed I didn't have an autoimmune disease. This phase was one of the most painful. I couldn't take Diclofenac to eliminate the pain so I had to start taking 15mg of Prednisone. He basically said it's not autoimmune and I should find another doctor, maybe it was orthopedic related. I got another MRI on the spine, and shoulders, but a spine surgeon said it was normal wear and tear and nothing structurally wrong, and the orthopedic surgeon said I did have a torn labrum (but I've had that for 6 years).
I was back to square 1 with no answers. I spent time on ChatGPT finding the best physicians in the nearby area who handle this. I kept refining the list and ultimately found someone who posted a video that she talked about treating PMR patients.
She told me since I had been on 15mg for awhile and somewhat still having levels of pain- that she needed a more careful taper journey. I describe it as being able to function, but not pain free.
She said if I came to her originally, she would've hit it with a high dosage. I dont know is she this specific number or it is what it is my mind but I'm thinking 40mg or even 60mg. I got the impression she treats it aggressively with prednisone and quickly tapers. Perhaps how it's used in other settings like when people are sick and get a 5 pack (50mg day 1, 40mg day 2, 30 day 3, 20 day 4, 10 day 5, 0 day 6)?
Since I was on 15mg for a prolonged period, my first reduction was to 12.5, then to 10. From there I went down by 1mg every 2 weeks.
She was as committed to get me off the Prednisone as I was, but she said the taper had to be more careful. I hope this helps.
Replies to "@kjoed53 I went to several physicians along the way. Rheumatologist number 1 didn't believe it was..."
@staydisciplined My first reaction to your age was, that’s young, 49.
Literature, as you know, says PMR happens at age 70 plus or minus 10 years, rarely younger and never over 90. I think that “never over 90” group is because that age group is so small, comparatively. and at that age one’s autoimmune system is on auto-pilot (doing only the minimum and not out to cause trouble.)
Perhaps those rheumatologists had that preconceived mindset and couldn’t wrap their heads around it.
PMR is a strange disease. It affects everybody differently, and yet similiarly at the same time.
Autoimmune misconduct tends to “color out of the lines” PMR, GCA, RA, PsA, ReA, MS, Gillian-Barre, Lupus, etc., or the lines get blurred.
Connect
@staydisciplined
My journey started with my PCP thinking that I had a pinched nerve. I have a history of cervical spine arthritis, spondylosis and stenosis so that's where everyone was originally looking. I made it all the way to a neurosurgeon and it was there that he determined that my symptoms sounded like autoimmune. He ordered blood work and referred me to a rheumatologist. The rheumatologist put me on 15mg prednisone because the initial blood work came back with elevated inflammation markers. He did extensive blood work to rule out everything else and then diagnosed PMR. Since 15mg prednisone wasn't doing anything, he bumped me up to 25mg. That worked for my hip girdle pain and most of my shoulder and neck pain. After a month he wanted me to taper to 20mg. I started feeling the pain again so I went back to 25mg and agreed to taper 2.5mg at a time. That worked for me. The extensive blood work ordered by my rheumatologist also pointed to a blood disorder and after being referred to a hematologist-oncologist, I was diagnosed with SMM.
Getting back to rheumatologists, it seems there's some doctors who aren't capable of diagnosing something unless they can point to explicit test results. PMR doesn't allow that. There's also a lack of consensus on what dosage of prednisone is best for PMR. Some start with the high dosage you mentioned, while others look for the lowest dose that works. My rheumatologist falls in that category. My journey has been further complicated by my SMM diagnosis though.