New Rheumy questions my 5 year old PMR diagnosis

[Bennijax]

I'm starting with a new NHS rheumatologist, saw her for the first visit last week.

On the same day I saw a new gerontologist, an 'Elderly Medicine' specialist.

Both questioned the PMR diagnosis I was given five years ago.

My recent bloods are nearly all "in range".

The initially raised inflammatory markers went down to normal as I began 5-weekly depo-medrone injections in 2020. With increasing mgs of prednisolone from March 2021 the markers have stayed normal. And my latest blood sugar test is now down to 'normal' too.

Yet I have stiffness, aches and pains, weakness, horrrid itchiness across various body parts at different times, very poor digestion, increasing incidence of blood bruises of various colours continually on left lower leg and now right forearm, and extreme fatigue and brain fog on more days for hours at a time. My left ribs hurt, and I've been experiencing painful, tight, rolling muscle spasms under the lowest left rib every day for over a year, getting worse.

The new Rheumy wonders if I might have fibromyalgia. Her recent blood test for rheumatoid arthritis is normal (I was recently diagnosed with osteoarthritis).

She wants me on methotrexate soon as I must get the preds dose down from current 11 to 8.....

Any thoughts from anyone? is it possible I no longer have PMR or was mis-diagnosed back in 2019?

[SnazzyD]

Have you tried someone like a chiropractor or osteopath? It sounds too specific an issue to blame it purely on PMR. I had a ‘stuck rib’ at the bottom and got chest muscle spasms and occasional diaphragm spasm. It was fixed.

healthline.com/health/slipp...

Saying that, 11mg can be plenty to keep inflammatory markers down so declaring not PMR now seems risky. If they don’t think you have or inflammatory condition, why are they considering Methotrexate?

[Bennijax in reply to SnazzyD]

Just their initial questions about PMR; with steroids they want me to get the amount I take down to 8. Methotrexate has not been decided, but they are first wanting to try to determine if I have PMR. That is what I understand....

Thank you for the link about the spasms - I want this rib pain, muscle spasm thing sorted soon - is not pleasant.

[Bennijax in reply to SnazzyD]

Snazzy - your reply shows just how amazing this forum is. You have provided me with the first description of my condition. I've been seeing my GP surgery about this for 14 months. They keep thinking if I take PPIs it will solve the problem. I finally started to take omeprazole but no relief for spasms or rib pain. The left lowest ribs are prominently proud too, I've copied the article and will drop it off to my GP and post a copy to the new rhuematologist. THANK YOU

[PMRpro Ambassador]

I'd want to know what makes her think that MTX will get you off pred if it isn't PMR but fibro - seems a very strange approach to me. If it is PMR then MTX MIGHT help you get off pred. But if it ISN'T PMR then why use something that is useless in fibro and of doubtful value in PMR? And can have some unpleasant side effects.

[Bennijax in reply to PMRpro]

PMRpro, how can I make significat progress tapering? I've tried several tims but get stuck at 11. Mid last month (September) I started the DSTM to go to 10.5 but after two weeks I was relieved to get back to 11.

Does the use of methotraxate only help tapering if one has PMR? is it used for any condition where preds have been used for a long time and tapering too difficult?

[PMRpro Ambassador in reply to Bennijax]

If you have PMR then pred is the only real drug that works. The use of MTX is to get more effect on managing the PMR from a lower dose of pred - either it suppresses the immune system a bit more OR it potentiates the action of the pred, it isn't really known which, it certainly can increase the side effects of pred so presumably that is the main action. If, as they seem to be suggesting, you don't have PMR at all, you don't need pred so you can stop it anyway, Neither pred nor MTX play a role in management of fibro.

MTX is the standard go-to in inflammatory arthritis, especially in the case of flares - but you say the rheumy has said RA testing is normal. What about seronegative RA? LORA (late onset RA) can present looking just like PMR and with no other blood markers - have they considered that?

WHY do you get stuck at 11mg? If Snazzy's description fits, it suggests maybe some inflammation, possibly some costochondritis as well and in that case the pred may be helping that. If pain is increasing with less pred, there must be some inflammation SOMEWHERE.

But a GP who puts their faith in repeated prescription of a PPI that hasn't worked before seems a tad stuck. One definition of madness is repeating an action and expecting a different result, I get the feeling your medics may have blinkers on and need to start thinking out of the box they have created for themselves.

[Bennijax in reply to PMRpro]

But, after taking preds for so long I cannot just stop them, surely? Adrenal issues? I'm as sure as can be that there is inflamation- as you say SOMEWHERE.

I'm screen shot-ing your response to print out and read over and over so I can work out what questions to ask the new rheumy.

Especially about seronegative RA / LORA.

Thanks sincerely for this advice.

[PMRpro Ambassador in reply to Bennijax]

You can't just stop them no, but you can get down to about 5mg safely and then you must taper VERY slowly and assess the effect. There is a load of info about adrenals in the FAQs and basal cortisol and synacthen tests for seeing if you are producing any cortisol - not that that means the whole set-up is working properly but it is a start.

And you don't have to be off pred to start other medication - some rheumies seem to think you do.

[AyJayBass]

You said recent Bloods all in range. Inflammation markers (CRP & ESR) should be in range with the Pred dose you are taking. Are they taking the fact that CRP/ESR look OK to suggest that you don't have PMR? If so, that doesn't make sense!