How long has PMR lasted - I'm trying to find the average

"According to your post, you have some other things going on. It’s always something 😆"

Isn't that the truth! Yes ... my medical problem list got very long after PMR was diagnosed. It wasn't so long before that. I only saw an ophthalmologist every so often and I listed him as my only doctor.

My list of doctors and my list of medications both grew quite long after PMR was diagnosed

At the top of my list of medical problems was "long term and current use of steroids." I must have missed something because I thought prednisone was the "treatment" for PMR.

When my rheumatologist said I had a "full range" of rheumatology problems, I started asking questions. I must have asked too many questions because then my rheumatologist called everything "systemic inflammation."

Coincidentally, now that I am off prednisone --- I now just have a "history of" many things.

@dadcue. Hopefully 2024 will be a better year for you. This year has been a rough one for me for sure. Be in good health!

I have had it for 20 months. Just dropped to 4mg of Prednisone today. I am very stiff and left shoulder blade area and left hip really hurt.

Hello @jonimclin, Welcome to Connect. Sorry to hear you still having some pain at your current dosage of Prednisone. You might find the following discussion helpful:
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

Did you have the stiffness in the left shoulder and pain in the left hip when you first started treatment 20 months ago or is this new?

I was diagnosed last July, managed to get down to 4 but will have to increase as struggling on 4mg, can you tell me what Prednisone masked as I feel I have different things. Dr monitoring me and now under a rheumatologist something doesn’t feel right. Yvonne

I am at 28 months on prednisone, started at 20 mg and down to 5. As I got closer to 5 I started having significant pain in different spots in my right shoulder and had an episode of severe right hip pain at 5 mg. The PMR pain I have affects both sides so I did not think it was that. I'm a retired PT and self-assessed the shoulder issue as bursitis. It's different from PMR pain, just in small areas and right where there are bursas. I went to urgent care for the hip and they took an x-ray. I do not have significant arthritis and the doctor thought it was "soft tissue". Again I self-assessed and believe it is iliopsoas bursitis. It could be that the prednisone masked these problems which were developing with age (74). It could also be that PMR and/or the drugs I take for it (prednisone and methotrexate) cause damage in the shoulders and hips.

I could share many stories about this masking effect of steroids. Some personally involved me but many more stories about other people on prednisone being admitted to the hospital. Classic examples are when signs and symptoms of an infection may be masked by prednisone.

One personal experience when the mask was removed involved severe spinal stenosis. I had acute onset neurological changes involving my legs. Foot drop and a tendency to drag one leg was the most concerning problem. My legs were numb but that was nothing new. An urgent MRI was done and soon an emergency lumbar spine surgery was being offered to me. The surgeon asked about pain and I had to confess to having "intermittent back pain but prednisone always relieved it."

The surgeon showed me the MRI and even I could see the extensive arthritic damage to a lumbar spine. Then I asked the surgeon if he was sure it was my MRI because I had no idea that I had a bad back.

Another incident was more embarrassing. I was being "detained" until an ambulance arrived. I was having "some breathing problems" but no chest pain. After the ambulance took me to the emergency room I proceeded to tell a doctor it was "all a big mistake." I was very calm thinking the doctor would agree with me.

A chest CT scan was done anyway. After the scan of my lungs, I was allowed to walk back to my room. I was wearing a portable heart monitor with telemetry. I was thinking someone else's alarm was going off when doctors and nurses raced past me but then they circled around me. I was instructed to sit in a wheelchair to be wheeled back to my room.

A doctor showed up with the result of the CT scan. He asked me about chest pain which I denied. I suggested that I be allowed to go home thinking it was nothing serious. The emergency room doctor said no I could not go home because there was a bed waiting for me in the intensive care unit.

Both my lungs were filled with many blood clots. A pulmonary doctor in the intensive care unit said he had seen everything but even he was "impressed" with my CT scan. He was also amazed I wasn't having any chest pain since I wasn't dead!

That's a fairly fast drop in prednisone dosing.

I was officially diagnosed April 20, 2023 and have been off prednisone with excellent crp and esr numbers since mid November. I probably had it starting much earlier in the year. I do not have any other auto immune conditions other than an extremely mild, asymptomatic case of hashimotos.

I would applaud you too. It is better to taper off prednisone as soon as you can. There is no rule about how long PMR lasts. It can be a few months or a few years and for some PMR may never go away.

For some people PMR goes away quickly. For others it persists for a long time. I do believe it is beneficial to start prednisone as soon as you realize there is a problem.

I had another autoimmune condition that wasn't hard to diagnose. Early treatment with prednisone at a high dose followed by a fast taper worked every time.

When PMR was diagnosed there was confusion about what it was. Prednisone was restricted and I didn't have enough prednisone to take. My rheumatologist actually wanted me to be completely off prednisone so she could see what was going on before she was able to diagnose PMR.

I ended up taking prednisone for 12 years after PMR was eventually diagnosed. My taking prednisone for years and years wasn't such a good outcome.

Considering everything that happened while I was on prednisone, I never want to take it again.