PMR and Joint Degeneration

[Orchid732]

Hi, I am new to this forum, diagnosed with PMR January 2020. I had pain and stiffness in arms and shoulders, along with elevated CRP and SED , and the blood work did not show evidence of RA, according to the rheumatologist. Started pred then, 15 mg., reducing down to 1 mg by August, which felt quite do-able. I also have arthritic shoulder joints, with no cartilage left in the gleno-humeral joints, and the recommendation from the orthopedist was to replace both shoulders, which can only be done one at a time. The right shoulder was replaced August 2020, and is healing well. About one month later, I tried going to 0 pred, only to experience a return of PMR symptoms (pain in arms, sometimes feet, sometimes the temporomandibular joint). This was improved by a week of pred. at 7.5, then down to 5, now on 4 mg. I am now doing the DSNS reduction in .5 mg. increments , in hopes of being able to receive the left shoulder replacement - The surgeon won't do the left shoulder replacement until the pred. is 1-2 mg., hence my interest in tapering. In addition, in the last month or so I have developed carpal and cubital tunnel syndrome in both wrists/elbows, and x-rays show the left carpometacarpal joint has no cartilage left - it is quite painful. I feel like the right wrist and thumb joint are headed in the same direction as the left, with increasing pain there. My questions are: is it possible to have RA without it showing up in the blood work? Can PMR cause this joint damage? If all these joints are corrected surgically, is it likely that the inflammation will start in another part of the body, such as the hips or knees, which at this point show now symptoms? Sorry for the long post and numerous questions, I hope this all isn't too unclear or confusing.

[PMRpro Ambassador]

PMR does NOT cause joint damage - it can involve the synovial lining in the joints but it isn't the type of inflammation that causes erosion. More relevant maybe is that inflammatory arthritis can present looking identical to PMR and it is then only when erosion is found in the joints that the penny drops that it wasn't PMR at all. And that is not unusual - it is claimed that some 1 in 4 initial diagnoses of PMR are revised at some later stage, often to LORA (late onset RA). There is no way to differentiate between them in the early stages - because there is the complication of what is called sero-negative arthritis where there are no blood markers. I am a bit surprised at your rheumy a) not knowing that and b) suggesting that a reduction on pred dose from 15 to 1mg in 7 months was possible or even likely. The median time to 5mg in PMR is just under 18 months and only 1 in 5 patients with PMR are able to get off pred in under a year. You are very unlucky in your choice of surgeon I think - we have people on the forum who have had shoulder, hip and knee replacements while still on pred - rehab post-op requires you to be able to do it and PMR really does get in the way!

[Orchid732 in reply to PMRpro]

Hmmmm, very interesting. I have consulted with a hand specialist and will have a follow up with her next week so can get more info then on what she recommends as far as treatment. At my initial appointment with her, before the MRI and nerve tests were completed, she took one look at the protruding bump on the wrist bone on the little finger side and pronounced that she thought it was RA. She indicated that some surgery would be involved, at least for the extremely arthritic thumb joint. Unfortunately, my GP refused to order another blood test to check for that, so I was planning to ask the hand dr. to order it, or the rheumy at my next appointment with him in a few weeks. But, if as you say it is sero-negative, it might still not show up. Sigh. I don't think the gp, rheumy and the hand dr. and the shoulder surgeon communicate at all, so hard to know what to do. The shoulder dr. is very well respected here, but expressed concern about infection rates with the type of procedure he recommends for the shoulder, which is a "shoulder resurfacing", where the head of the humerus and the socket part of the joint are covered with some material (titanium, maybe, I don't recall) to keep them from rubbing together. He claims that it has a much higher rate of infection than other joint replacements, such as knee or hip. Right now it feels like an endless circle of newly cropping up joint damage and trying to manage pred. while staying on the lowest possible dose. I am in the US, so don't know if protocols about getting off pred. are more extreme here. He has been quite amenable to doing things as I want to; not sure how he would feel about staying on pred. for as long as it apparently is usually done for PMR. I live within a day's drive of a Mayo Clinic facility, and have considered going there for another opinion. I know they are known for a more comprehensive approach, looking at the whole body and different specialists working together, which might be very helpful. Thoughts?

[PMRpro Ambassador in reply to Orchid732]

If it is an option I would go to the Mayo - which one is it? If you start another thread asking that question I'm sure you will get some positive feedback about the Mayo Clinics. Rochester is a centre of PMR knowledge - a lot of research has been done in Olmsted County which has a very high rate of Scandinavian genes in its population. The advantage there is two days (I think) of joined up thinking about all things rheumatic.

GPs are out of their depth, specialists seem to be precious. If you find somewhere that does talk to each other it can only be better.

[Orchid732 in reply to PMRpro]

I live in Florida, so was thinking about the one in Jacksonville. Especially with Covid travel restrictions, it would be nice be able to drive rather than fly. Thanks so much for all your help, I will post the question about others’ experience and Mayo.