so confusing

[BorderLuv]

I had PMR in my 50s. Was treated with prednisone until the PMR burned itself little over a year later. Last June, 20 years later, my hands and wrists became a problem. No swelling but pain & stiffness in fingers and wrists. Carpal tunnel syndrome was the first dx.

Over the summer pain and stiffness spread to shoulders, arms, pelvic area, hips. All similar areas I had experienced with PMR 20 years ago - however the pain is not nearly as intense - maybe 70% of the severe pain with PMR. It was difficult to function normally but I remember PMR hurting a lot more.

Bloods in October ordered from PCP showed RF at 5 (she didn't test sed rate or CRP), because of the RF was referred to a Rheumatologist. After a 3 month wait, saw Rheumy who ordered full body x-rays and a complete blood work. She also put me on a 15 day prednisone trial starting at 20mg, which I started after the blood tests and x-rays.

Within 4 hours of the first dose I felt normal again, could get off the couch, touch the floor, attend to bathroom hygiene easily, etc. Felt 100% until day 4 post pred trial when hands became slightly painful. Not as bad as before the pred trial. Now at 15 day post-pred trial, pelvic area, shoulders, hands, wrists have some pain and stiffness though not as bad as before the pred trial. I can do everything like cooking, gardening, cleaning - just a little stiff but what I feel is normal stiffness for a 73 year old.

Saw the Rheumatologist yesterday to go over the x-rays and bloods results. The 5 minute visit consisted of being informed that I have RA and to begin treatment with Methotrexate which she said will effectively shut down my immune system. I have a follow up appt to see her again in 1 month.

X-rays showed severe OA in both hands and moderate to severe OA in spine and neck (I have no pain there, thankfully). Lab results show CRP at 18.9, sed rate was normal, RF normal (this time). The only other "off" numbers were for kidney function which was new and surprising. I have an appt with PCP to discuss those. I've read that OA and also kidney disease (if that is going on) can cause CRP to rise.

This Rheumatologist got a couple of things wrong yesterday. She said "since I had to take prednisone for so many years before" (no, just one year) and she got the terms "fibromyalgia" and "polymyalgia rheumatica" mixed up a couple of times. She also stated that it was common for post PMR patients to get RA later on. I've never heard that, is that true?

She didn't fill me with confidence with her diagnosis for several reasons. Super short visit, no eye contact, felt very rushed, seemed confused. Also, what I feel is a big one - I do not have any fatigue, no weight loss, always have a good appetite. I don't feel "sick".

I've made an appt for a second opinion at a different rheumatology practice in March. Where I live is known as a "healthcare desert". Better care and more options are found near the coast, about an hour drive from my home which is not a problem for me.

I would be grateful to hear your thoughts. Is my hesitation to go with her diagnosis unwise? Is there a chance that this is PMR again, but just not as severe? Is there anything else I should keep in mind or research before the 2nd opinion? I am not starting the Methotrexate until the 2nd opinion.

Thank you so much for reading my long post. I love this forum, have kept up with reading your posts for years now. Can't get your knowledge and experience anywhere else, that's for sure. xo

[PMRpro Ambassador]

I would class that as a right load of rubbish!! Your response to pred, both the relief so quickly and the return of symptoms so soon, is typical of PMR.

Methotrexate will not "effectively shut down your immune system" - that would be rather dangerous! It will damp your immune system, not as dramatic as shutting it down. A rheumy who doesn't know the difference between fibro and polymyalgia needs some retraining (at least) and it is NOT "common" for post-PMR patients to develop RA. Are you sure that was a doctor and not a medical student moonlighting?

[BorderLuv in reply to PMRpro]

Thanks PMRpro, I'm not sure of anything these days! I also thought the quick response to pred was very telling for a diagnosis of PMR. After she heard me explain how quickly and totally pred helped, she didn't bat an eye. The only doubt I have with a PMR diagnosis is that the pain and stiffness isn't as bad this time as what it was 20 years ago when I had the first bout, but I guess that's possible.

[PMRpro Ambassador in reply to BorderLuv]

Everyone I know who has had it more than once says that each episode was different - even affecting different areas more. Their response to pred and dose were different. Maybe you recognised it sooner, maybe you were doing lots more at 50+ than now at 70+ so notice it more.

It may not be PMR, but it is something and PMR is very possible, even likely. And her response was ridiculously uninformed.

[piglette]

If she muddles up fibromyalgia and PMR, one asks what else is she muddling up! Your plan to have a second opinion is not a bad idea.

[BorderLuv in reply to piglette]

Yes, exactly my thought. I can see lay people getting those two confused!

[PMRpro Ambassador in reply to BorderLuv]

Even a lot of non-rheumy doctors and other HCPs manage it!

[Bcol]

A second opinion sounds like a very sensible option, I will refrain from commenting on the ability of the first Rheumy. Your next appointment isn't until March, which is a few weeks away, if the Pred you started with has worked successfully do you you have enough to keep you going until March?

[BorderLuv in reply to Bcol]

Hi Bcol, I only had enough pred for the 15 day trial. It must be out of my system by now and I’m doing okay without it. Sorry I think my original post was too long and convoluted to follow. 😞 I don’t know the reason crp was high and I had pain for months before the pred trial, but now I’m feeling so much better. It’s been over 2 weeks since I had any pred.

[PMRpro Ambassador in reply to BorderLuv]

Did the pain start after a Covid (or other) vaccine? There are short-lived reactions that persist for a few months and then disappear and might go faster with a course of pred like you had. If the disease activity is very low, then it might take a while for the inflammation to build up again so your appointment in March seems a good move. The first obviously thinks SOMETHING is wrong but she seems very confused in her thinking - unless there is something in the tests you haven't mentioned. RF tells you relatively little, an anti-CCP test would make more sense since if it is positive it it very unlikely to be PMR and people with raised anti-CCP almost always go on to develop RA eventually though it may be years.

[BorderLuv in reply to PMRpro]

Thank you PMRpro. No vaccines prior but did have covid for the first time in March. Our dog died unexpectedly at the end of May which did us in for a few weeks. Often wonder if that was the start of it.

The bloods show negative CCP. The "flags" atypical P-Anca titer 1 : 320, MPV 12.6H, CPR 18.9H, Reactive to Hep A, AB (surprised me), Alpha 1 globulin 0.4H, and kidney function Urea, Creatinine, EGFR Bun/Creatinine ratio.

[PMRpro Ambassador in reply to BorderLuv]

Did the pain start after the Covid then? Or before? The pANCA is an indicator of a different sort of vasculits but I can't remember if 1:320 is borderline or high enough to prompt further investigation and I can't find it - the fingers aren't walking too well! In the early stages of anything it can be difficult to say if something is borderline OK or borderline not. But take all your results with you to the second opinion rheumy. The flagged reanl function stuff bothers me - how out of range were they?

[BorderLuv in reply to PMRpro]

Again, thank you very much PMRpro. xo

Had Covid in mid-March. Best of my recollection hands began being troublesome late April. I can see on my calendar that's when I started not being able to volunteer, and the rest of the body (shoulders, pelvic area) following close behind in the coming weeks.

P-ANCA 1 : 320 (<1 : 20 titer)

Renal: UREA Nitrogen (BUN) 32 H (7-25mg/dL), Creatinine 1.06H (0.60-1.00mg/dL), EGFR 55L (OR = 60 mL/min/1.73m2), BUN/Creatinine Ration 30H (6-22 calc)

I will definitely take all the results into the new rheumy for the 2nd opinion.

[PMRpro Ambassador in reply to BorderLuv]

I would suspect then that you may have a Covid-triggered PMR - whether it parallels with Long Covid is another matter but PMR isn't the actual disease, PMR is the name given to a set of symptoms that has an underlying cause. There are several, ranging from amongst others. cancers (very occasionally), via hypothyroidism to various forms of inflammatory arthritis which can present identically to "our" PMR but there is nothing that can distinguish them apart at that stage. All the other options should be ruled out and then a diagnosis of PMR as we talk about it can be made, often including the response to pred as a criterion. In autoimmune illness, something is the final trigger to the immune system to send it haywire, it is no longer able to recognise body tissue as self and it attacks it as if it were a foreign body like bacteria or viruses, causing autoimmune inflammation. The disorder you are diagnosed with depends on the symptoms you show and organs/tissues attacked.

[BorderLuv in reply to PMRpro]

Many thanks, PMRpro. Your explanation has brought light to my muddled thoughts and a different perspective. Feeling less stressed now. I appreciate your time and the sharing of knowledge.

[Karenjaninaz]

Sometimes kidney function # low when dehydrated. I get normal values if I keep hydrated.