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Is it PMR (and/) or Osteoarthritis?
My encounter with PMR began in November 2022, when suddenly I was beset with the pain and stiffness you are all familiar with. Even rolling over in bed required a fully-developed plan implemented with gritted teeth. Climbing the stairs was done on all fours. After a couple of weeks the diagnosis was made and a hefty dose of prednisone was started. This med was almost cartoonishly effective. Now I am on a taper like everybody else here!
Anyway, for months I have been bumping my way down the taper (presently a split dose of 6 and 3), with a pain level of 1 to 1.5 fairly consistent, and with a rare 2 or 2.5 usually associated with strenuous labor. However, ever since beginning the prednisone I have had no symptoms in my upper body; they are all located in the hip area. Furthermore, the symptoms are all located in the groin area, say, inboard of the hip flexors. OK, near my tackle. I have zero symptoms outside the groin area.
I know that osteoarthritis is lurking as it was identified in a hip x-ray taken when this all first hit, but the arthritis had been asymptomatic. But I am wondering now if in fact the PMR is being fully controlled by the steroid and all felt pain is actually associated with the arthritis. If so, perhaps I should stop hand-splitting firewood and speed up the taper.
Could you please weigh in on the following questions?
1. Do you have symptoms in your upper body/shoulders?
2. Precisely where are your middle-of-body symptoms located?
Many, many thanks!
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Glad you got a diagnosis. Hope you can get some relief now. Best regards
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1 ReactionExactly where is my horses tail? All the Docs I have seen say it is not an emergency but sometimes it feels like it. I have consult appointments with two neurosurgeons to see what can be done. This is not a pleasant way to live since Jan 26th.
@queenie2030
At the end of the spinal cord there is a collection of nerve roots, which are horsetail-like in appearance and hence called the cauda equina (Latin for horse's tail).
It is the nerves that continue after the spinal cord stops. The spinal cord technically stops at roughly the L1 level.
Sorry for the confusion. I have the same problem. I don't have too much space in my spinal canal for these nerves. My worst levels are L4 - L5 and L2 doesn't look very good either. Surgery is my only option. My neurosurgeon is waiting for me to say when I'm ready but I don't want to think about it.
The diagram in this link isn't the best.
https://medical-dictionary.thefreedictionary.com/cauda+equina
I will try to find a better one if you wish.
These were the notes from my recent neurosurgery appointment:
"Patient is on a biologic agent Actemra for rheumatoid conditions. You may recall that last year he was transiently switched to Humira because of lack of availability of the Actemra and deteriorated significantly. His MRI even significantly deteriorated with
the development of a large synovial cyst on the left. We had planned surgery first in February however he was dramatically improved when he was switched back to Actemra (tocilizumab). MRI showed improvement of the synovial cyst."
It seems such a sometimes nasty swap we need to experience to get a hold of the pain. I hope there are medical researcchers looking for other ways of relief. for us sufferers.
I have been on prednisone for classic pmr for five years. Now on 2mg/day but if i stop joint pain flares up and i am crippled. It is not the same pain as pmr, nor did i have joint pain before pmr. I have a theory which medical science doesn’t agree with, that either the pmr or prednisone can cause previously minimal osteoarthritis (which we will all have to a degree due to our age group) to flare up into a florid monster. My theumatologist suspects seronegative inflammatory arthritis. I suspect unacknowldged link between pmr and rampaging osteoarthritis… three other people in my orchestra had pmr and now experience the same arthritic pain (? Or Possible link between orchestral playing and pmr! n=1 science)
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6 ReactionsI like your theories and would like to add some additional ones of my own.
I was diagnosed with seronegative inflammatory arthritis approximately 20 years before PMR was diagnosed. PMR and inflammatory arthritis can coexist. The two entities cause inflammation in structures that are in close proximity to each other.
Synovitis is one of the hallmarks of both PMR and inflammatory arthritis.
https://creakyjoints.org/education/what-is-synovitis/#:~:text=In%20RA%2C%20your%20immune%20system,Synovitis%20equals%20active%20inflammatory%20arthritis.%E2%80%9D
I would guess that PMR exacerbates arthritis.
The link between prednisone and arthritis is clear. Prednisone is known to have musculoskeletal adverse effects.
https://pubmed.ncbi.nlm.nih.gov/1429389/
and
https://pubmed.ncbi.nlm.nih.gov/12025801/
I would guess that prednisone exacerbates arthritis too.
Lastly, I would guess that the damage caused by inflammatory arthritis and osteoarthritis all begins to look the same as we age. The wear and tear arthritis blends into the inflammatory arthritis so that it becomes hard to tell what causes what.
I don't think inflammation is confined to any particular area of the body simply because we happen to be diagnosed with PMR. I think of inflammation as being able to attack any part of the body that it chooses to attack.
After years of elevated inflammation markers and a myriad of problems, my rheumatologist stopped saying that I had any specific diagnosis. She said I was on prednisone to help regulate "systemic inflammation."
All I know is that I'm "muchbetternow" since getting off prednisone
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5 ReactionsHello @muchbetternow, I would like to add my welcome to Connect along with @dadcue and others. I love the positivity of the member name you chose - we all want to be much better NOW! I think one of the reasons PMR can be difficult to diagnose is due to the spectrum of conditions with similar symptoms.
--- Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica
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2 ReactionsVery well researched and explained. Thank you for sharing.
PMR diagnosed late September, started prednisone 20, had to bump to 30, started tapering -5 every two weeks, now at 9 and tapering -1 every month. SED now normal, rheumy says we are therefore finished treating PMR, and the task is to get off prednisone without triggering adrenal insufficiency or crisis. Experiencing an elevated hemoglobinA1C due to prednisone, not enough to require insulin, fortunately. Current pain/stiffness level 1 to 1.5 confined to wrists and fingers, gone by 1500 daily, diagnosed as osteoarthritis (which was evidently there but asymptomatic prior to PMR). Taking tylenol AM which helps quite a bit. Note: Apparently need to avoid NSAIDS while on prednisone due to possibly problematic interaction. Good luck to everyone on this trip.
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2 Reactions"rheumy says we are therefore finished treating PMR, and the task is to get off prednisone without triggering adrenal insufficiency or crisis."
Thank-you for making this point. I should have known about this in the very beginning of treatment with prednisone. Adrenal insufficiency, to some degree, is an inevitable consequence of long term prednisone use. However "long term' isn't really very long.
Tapering prednisone slowly is recommended because of the risk of adrenal insufficiency directly. The indirect risk of PMR flares is probably due to adrenal insufficiency when one considers that one of the functions of cortisol is to regulate inflammation.
When we have a low cortisol level after we get to a low dose of prednisone our body's ability to regulate inflammation is compromised. Cortisol is called the "stress hormone." It stands to reason that stress of any kind triggers inflammatory flares when our cortisol levels are too low.
It took a person who suffered an adrenal crisis to explain this to me. Something clicked so I understood why I was unable to taper off prednisone after more than 12 years. My endocrinologist thought it might be impossible for me to taper off prednisone after that long.
Tapering off prednisone can be done even after 12 years but I needed to take a biologic that didn't suppress my adrenals. I stayed on 3 mg of prednisone for 6 months until my cortisol was at a low normal level. From start to finish it took nearly a year to be able to easily taper off prednisone.
A PMR flare was still possible but that inflammation was blocked by the biologic
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