Good days and bad days

Did your muscles feel at all trembly when you tried to use them? I ask because when I had been thrown off of my horse, I felt like that. Was sure it was adrenal shock. Been thrown off many times and never had that reaction. Glad you were able to rest and get better. Sounds like you did the right thing.

Maybe try just tapering 1/2 mg every 2 months. I went for my 3 month Rheumatologist visit yesterday, and all blood tests normal. Staying on this 2 mg for another month and then I will go down to 1 1/2 mg. This has to be a slow process. Good luck to you.

Thanks to all of you who responded to my post. It seems that the PMR is under control with 10 mg prednisone 2x a day and the low dose gabapentin. I am also doing water exercise and adjusting my diet. Will work with my doc to start tapering off when we think I'm ready.
Blessings to all of you.

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?

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.

Back 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.

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?

Gabapentin has been a life saver for me. I’m unable to take prednisone as it raises my blood sugar to way above normal levels I’ve been on gabapentin for a year for knee pain post replacement surgery however the pain I’m experiencing in my shoulders arms and feet are new and the rheumatologist has diagnosed me with poly arthritis nothing I’m currently taking is helping me and without prednisone I don’t know what my options are

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.

Are you referring to a cytokine storm? Anything is possible which is why a complete health history is needed.

You are right ... @whyohwhy doesn't say he was diagnosed with PMR. I must admit that I was skeptical of my diagnosis too. My rheumatologist never said it was PMR only. She actually thought it was unfortunate that PMR was added to the mix of other things.

At the time, I didn't even know what PMR was. I was just happy to get the prednisone I needed. When I couldn't taper off prednisone for more than 12 years I wasn't too happy. Starting out with 40 mg of prednisone was a bit much for PMR and still needing 20 mg after 10 years wasn't good.

Now I'm curious about how you were diagnosed with PMR. My first symptom was not being able to lift my arms without severe pain. To a certain extent someone could move my arms for me without as much pain. My shoulders hurt the most at first until the pain started to spread everywhere. Shoulder pain wasn't what I had ever experienced before this.

My apologies to lanieg@lanieg for jumping on her post and changing her subject, I have NEVER engaged in any support group much less on the internet.
Consequently, I'm bad at the protocol. I learn fast, however.
Thanks to John and Dadcue for feedback.
OK to answer some questions. Two ER test results. CRP 176.38. Sed rate 29.
Background: History of back issues. Like many others have DDD (degenerative disc disease)...L1-S1 a mess. I can live with that. In Sept 22, had a steroid injection at L3 which provided relief through Jan 23. During that time I began running again...up to 2miles/d. I had been running 5mpd every other day 2-3 yrs. prior. Felt good. But then back flared up again. Went back to orthopaed...long story ended up with RFA (ablation on L3,4,5) with only moderate success Brings the story to Sept of 23, when I reinvested in the orthopedic course. No surgery was outcome of all visits. So live with it. That I could.
Enter 12/3 ER visit. Long journey to get to PMR, eh?
Questions:
1. ER Dr. told wife that he thought I had PMR. I have nothing in writing.
2. ER Dr. administered dilauded for pain
3. ER Dr. told me to see my PCP in 2d.
4. Hell to get in to PCP given pain. Did within 2d. Got prednisone 20mg. Didn't do shit...got another 5mg.
5. Now 1 mo in and everyday is a new adventure...as lanieg said...some good, some bad.
That's my story.