Update on Rheumatologist Appointment

Hi All, hoping you’re having good, comfortable and pain free days.

As promised, I’m reporting back on yesterday’s findings on my second visit to the rheumatologist.

To my surprise I didn’t see the male Rheumy I had spoken to on the phone, instead it was the consultant (back from holiday) I’d seen the first time.

She was rather concerned to hear I was still suffering around 50% of the original pain/joint mobility issues after having had 4 weeks on 20mg Prednisolone and so started back at the beginning with my full case history - the sudden onset following a nasty cold virus in mid Feb this year - and asked for every symptom in much detail followed by another thorough physical examination. She’s showed concern that I’m still getting left-sided jaw pain, neck pain and occasional temporal pain but only the left side - altho no head tenderness and vision in left eye is clear but my pre-existing glaucoma has already taken its toll on my right eye and that vision is poor.

In fact the whole left side of my body is much more painful than the right and new pain has now begun in my left knee too.

Her conclusion: as my CRP had responded in 2 weeks of taking the Prednisolone (at 2nd blood test) by dropping from 107 to 27 (0-5 normal range) and various other factors I can’t remember (brain fog), she stands by her original diagnosis of PMR and has doubled my Prednisolone to 40mg for the next 2 weeks, reducing to 30mg the following 2 weeks with another blood test halfway thru the month. This, she says, will show her if it’s only PMR we’re dealing with or, as she has a suspicion there’s another of the less obvious types of arthritis that has attacked me as well, at the time of the original virus. If so she’ll see me again and start exploring other avenues.

She says I tick all the PMR boxes plus my family history (my father had PMR; my mother had OA; my daughter has Fibromyalgia, I also have OA and needing hip replacement on right hip).

So that’s where I am….back to square one and another 4 week waiting game.

Sorry this post is long and involved….but you did ask 🤣🤣🤣. Keep well xx

[DorsetLady PMRGCAuk volunteer]

Thanks for update…..and good luck with increased Pred.

At 40mg you certainly should show a decrease in pain, but just a bit concerned that it might mask other issues which rather defeats the object. The one sided issue is also a bit odd, but as we all know, the illness doesn’t always do as the book states! CRP certainly is still high, but good that it’s going in the right direction.

PS..don’t get carried away with the higher doses and do too much! 😊

[123-go]

Your rheumatologist is doing her job well in keeping an open mind; things don't always go by the book. I also believe that it's a good thing to take a look back at patients' history so that nothing is overlooked.I wish you all the best.

[PMRpro Ambassador]

She sounds like a sensible and caring rheumy in fact. She is doing due diligence - but it doesn't all happen in a day, nor even a week. Sometimes not even a month,

The 20mg she started you at is standard - and then you reassess. Starting at a higher dose clouds the view - PMR alone is characterised by a speedy response and even then, it doesn't happen with everyone. But if you dive in straight away with a high dose - you won't know, and PMR isn't the only thing to respond to higher doses of pred. She has registered the things that don't fit - and I don't find the one-sidedness of some symptoms surprising to be be honest. GCA is said by some to be unilateral, occasionally bilateral. You can't have it both ways to suit the facts you meet.

It may be a 4 week waiting game - but she is gathering evidence in that time. Far better to do that than make assumptions that result in missing half the story and the wrong approach being used for years.

[Hidden in reply to PMRpro]

Yes I was very pleased with her response too and felt she wasn’t going to give up until she had sorted me out…in fact she’s phoning me as soon as the next bloods are back to discuss results and keep me in the picture she said. Perhaps I haven’t made it clear, but altho the left side of my body is much more painful I do have pain and stiffness in all corresponding joints on the right too, but to a lesser degree -apart from the neck / jaw which is only left-sided. Thank you for your interest and support, it’s much appreciated x

[PMRpro Ambassador in reply to Hidden]

It iS your mention of JOINTS that bothers me as much as anything else - joints really don't figure massively in PMR. Except maybe misdiagnosis of frozen shoulder ...

[Hidden in reply to PMRpro]

Sorry, perhaps ‘joints’ was the wrong word to use I should say in the shoulder area etc..the pain/stiffness radiates when I try to move the shoulder or wrist ‘joints’ …incidentally, just got up having now taken the 40mg Prednisolone 24 hrs ago and not as painful or uncomfortable this morning for the first time in two months so I’m hoping over the weekend I see a vast improvement 🤞

[PMRpro Ambassador in reply to Hidden]

That's more like it - but needing 40mg to get it under control suggests it might be a bit more than "just" PMR.

academic.oup.com/rheumatolo...

You can have PMR. PMR symptoms due to LVV and PMR dur to GCA ...