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hoping this is helpful. I'm hopeful and always skeptical. What is a rheumatologist anyway?
rhetorical please.
Many questions.
My first is....how severe was the first onslaught of PMR. Below is my experience. Admitted to ER on 12/3/2023. Absolute pain throughout body. Could not walk, any movement extreme pain. Head hung. Not move head. Move eyes for range of vision. Pain throughout body. Felt like my butt fell off. My thighs front and back were being shredded. Transported and transferred for all ER testing. Literally unable to move. Male, 81 yrs.
Based on your experience, is this particularly severe? And do you have any insight as to what that means for recovery?
Replies to "hoping this is helpful. I'm hopeful and always skeptical. What is a rheumatologist anyway? rhetorical please...."
Hello @whyohwhy, I would like to add my welcome to Connect along with @dadcue and others. I was in my late 50s when my first round with PMR came and the pain came on gradually over a month in the later part of the year so I kept putting off going to the doctor until I finally had no choice and wasn't able to walk and the pain was awful. I was fortunate that I got a phone referral and my primary care setup an appointment with a rheumatologist. He diagnosed me with PMR late morning and I had a follow-up appoint with him in the afternoon. I picked up my RX at the Mayo pharmacy and went to lunch and took my first 20 mg dose of prednisone. By the time my 2pm appointment came up I was walking again and pretty much pain free. I did struggle tapering off the first time and took 3 and half years to do it and still have little to no pain when I was off prednisone. I'm 80 now approaching 81 in April and I hope I never get another visit. After my second time with PMR 6 years later I changed my lifestyle - healthier eating, less sugar and inflammatory foods and more exercise and was able to taper off of prednisone in 1-1/2 years. My PMR has been in remission going on 6 years now so I hope I don't see it again.
You might find the following discussion helpful for managing the symptoms:
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/.
Have you started a treatment yet?
It would be helpful if you knew your test numbers. If your history
was a very sudden onset after a possible trigger like extreme exertion or an infection that might cause an acute inflammatory “storm”.
Are you responding to prednisone?
Results on prednisone, dosage needed and how it started may help your doctors speak about your progress going forward.
Rest, watch your diet and keep asking questions. I was a healthy
71 when I got off a flight from Europe with sudden onset and couldn’t lift my arms. Did well off
prednisone tapered for 13 months.
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That is a good question ... It took a long time for me to spell rheumatologist but mostly they are another ----ologist.
I don't mean to be insensitive to age but I define the severity of PMR in terms of age. I was 52 years old when I was diagnosed with PMR. I didn't go to the ER but my wife offered to take me there. She didn't like the idea of helping me get dressed and doing things for me but that wasn't that big of a change.
I had a steady stream of bad days because I didn't have any prednisone. I was well versed with taking prednisone before PMR was diagnosed. My worst fear happened when the pain started to "spread all over" and I couldn't take prednisone.
It took about 7 days before my wife called her doctor. My wife told her doctor that I was self medicating with prednisone but I didn't have any. This doctor told my wife that I needed to be seen immediately. I didn't have my own medical doctor but I certainly didn't want to go see my wife's doctor.
I told my wife's doctor that I knew an ophthalmologist well because of a long history of recurrent uveitis This time I didn't have uveitis so I couldn't call him.
https://www.aao.org/eye-health/diseases/what-is-uveitisBack to the age analogy --- I told my wife's doctor that I felt like I was 100 years old instead of 52. I said that I just needed prednisone and I would be fine. She seemed aghast that I would expect her to write a prescription for prednisone just like that. Maybe it was the history of uveitis and "pain for no reason" that made my wife's doctor think that I needed a rheumatologist. She wouldn't prescribe prednisone.
By the time I saw a rheumatologist, I embellished my story a bit more. I explained that I felt like I was 150 years old and rigor mortis was beginning to set in. That enabled me to get some prednisone from the rheumatologist but not enough.
Eventually I found my own primary care doctor who was most sympathetic. He would prescribe me prednisone if I begged him.
Six months later I was diagnosed with PMR but only when I was told to stop taking prednisone. I only managed to be off prednisone for two days but it was enough for the rheumatologist to diagnose PMR.
My new primary care doctor made a bold apology to me. He said at first he thought I was a crazy person who wanted prednisone. He thought I had PMR after our first visit but the rheumatologist told him it wasn't PMR.
In my own personal experience, the severity of PMR depends on how much prednisone you need to start with and the duration of time you need prednisone.
My cumulative dose of prednisone over many years was massive but now I'm off prednisone.