Prof.Dasgupta on PMR and GCA

[More-physio]

Thought some folf might find this interesting. Rheumatology physio talking to Prof Dasgupta on PMR and GCA.

youtu.be/vdwjdQOfjMc(Not working as expected?)

It's about 45 minutes long. Not sure if the link will work, you may have to cut and paste address into web browser.

All the best

[benhemp]

This is excellent. Thanks for sharing it! I learned some new things that I will share with my GP.

[bussell]

I found this very interesting and instructive and it reassured me about my GP's view that I do not need to see a rheumatologist at the moment. First encounter with Prof Dasgupta, but surely not the last. Newly diagnosed last month, this talk backed up the diagnosis - I seem to be an absolutely classic case! Well, it's always better to know! Useful info too on other conditions we may have and how that might impact on treatment. Thank you for posting this.

[Daisyfield]

I’m still confused. Here he says under 65 and no inflammatory markers are not PMR. This is what a rheum told me too.

But there is no other differential diagnosis given to my symptoms.

I am off steroids two years on from ‘diagnosis’

I did have sudden onset bilateral shoulder pain back then.

I am now just achy mainly in big muscles of long bones and trapezius. I can’t exercise like I used to without muscle fatigue. I’m weaker.

I’m 53

[PMRpro Ambassador in reply to Daisyfield]

Wonder if he'd like to tell me to my face that I don't have PMR? Textbook presentation, textbook response to pred (in 6 hours) when I finally was allowed to try it. I was still 51 when the first symptoms appeared, just 57 when I got a grudging diagnosis. My inflammatory markers were raised FOR ME but they were at the upper end of normal so no-one noticed. I have absolutely no signs of any inflammatory arthritis which is no doubt what he'd say and another top rheumy in the field is satisfied it is a form of PMR and I score very highly on the assessment criteria even without the raised markers.

We have something - and it is very likely to be a form of PMR. One thing I have noticed over the years is that younger patients tend to have lower markers and a form of PMR that lasts longer. And a lot more resistance to diagnosis by certain rheumatologists whose experience should have informed them that PMR is a very broad church and patients vary a lot in presentation. What it is, is a corticosteroid-responsive set of symptoms that can be called PMR providing other things have been ruled out. But they won't bend to the concept that they might be wrong.

[Daisyfield in reply to PMRpro]

I know. I feel this frustration too. And I feel dismissed.

The Rheum got me to squeeze his hand and said my strength is good!

That’s hardly a test of strength.

I don’t have elevated inflammatory markers at all. I never have. But I know there is some inflammatory process happening in my body.

No joint involvement. But muscular/vascular

GP thinks it’s PMR and says I could go back on steroids. I’m resisting it at mo, thinking is there something else that I don’t want steroids to mask.

I feel in limbo.

[PMRpro Ambassador in reply to Daisyfield]

And? Loss of muscle strength (measured objectively) is not associated with PMR - it is related pain that limits us. Does that rheumy know much about PMR? At least some work accepts that a small proportion of patients don't mount the inflammatory response - and some do but have a very low starting point.

What was the lowest pred dose that worked for you? Has the GP checked all the obvious things? Did the rheumy check anything? If it is a low pred dose I'd accept the GP's offer - because unmanaged inflammation isn't doing your body any favours either. It increases the risk of peripheral vascular disease and some cancers as well as other cardiovascular problems.

[Daisyfield in reply to PMRpro]

They’ve done a whole host of bloods. Al normal. BP etc normal. I’m thinking about the steroids. Last ‘effective’ dose was probably about 3-5 mgs but it was never consistent.

Even now I will get a few days I feel almost normal but others where ache and feel 40years older than I am.

I know it’s wrong to compare but I see friends I used to excercise with doing stuff I loved but just can’t at mo.

Ugh. Feeling a bit sorry for myself I guess.

It’ll pass.

Plus I’ve also put in weight so I think I should try to do the low carb again. I think That might help a lot.

X

[PMRpro Ambassador in reply to Daisyfield]

If you are able to manage on 5mg or less after 2 years, that is a low dose, isn't going to cause much in the way of problems and that is what good rheumies are aiming for. If the patient gets to that level, it is a good result. I would be on the 5mg like a shot if I were you - and given your symptoms are liveable with but still limiting, maybe you would get to a lower dose now.

[DavidMF in reply to PMRpro]

I listened with interest to the whole presentation, but ended up with a feeling of being depressed. Felt that I've been let down by the medical profession, all too willing to get swiftly onto the next patient. I'm now in my 7th year with PMR having started at 70. Took 3 months of testing only to come up with "there's nothing wrong" At that point I was overdosing with standard painkillers and couldn't stop turning in bed with shoulder pains. A community manager, who looked after a home for the elderly, when hearing my symptoms, immediately said "Polymyalgia" New blood test and it came back 69/70 CRP/ESR then 15mgs Pred. 5 hours later I was bouncing around, feeling like I was 25. Since then 3 weeks later "You need to get off Steroids" only to find I set off onto a YoYoing between 10 / 19 mgs. After a couple of years I managed 8/12mgs moving onto DSNS. Last couple of years I've got down to 7/5mgs and 3 months ago stable at 5mgs.Stayed on that, just to feel good and then DSNS to 4.5mgs still OK, but on trying 4mgs it failed and lots of old symptoms started happening, eventually getting back to 4.5mgs. Now settling on that for now, might try in a months time.

Overall I'm healthy, though have lost a fair amount of strength over this last year, reading, but not suffering. 1st Vaccine received in Jan, maybe end March for 2nd.

I've attended annual seminars and herd Prof Dasgupta, before, but this presentation seemed to try and satisfy everybody and nobody. Perhaps in trying to get the NHS to change and perhaps research more about PMR the Prof. has become worn down by the resistance.

Thanks to PMR/GCA & Healthunlocked I've felt supported and assisted in understanding my illness. It's been the only thing that has kept me going over such a long time.

My thanks to all who try so hard.

[PMRpro Ambassador in reply to DavidMF]

I couldn't agree more - not just on this presentation,

[tangocharlie in reply to DavidMF]

As another long-termer I totally agree with everything you say. I have been badly let down by the experts who were suposed to help me - one thing that drives me on to try and help others with these debilitating conditions. I know the Prof is an amazing doctor who does so much for the charity but I do wonder where he gets some of his ideas from as he doesn't say, so I don't know if it's from research or just his own personal opinion. By his definition I wouldn't have been dx PMR because my bloods were almost normal and I was 51, yet it was PMR, confirmed by PET-CT scans.

[tangocharlie in reply to Daisyfield]

I was 51 when I got it and rheumatolgists told me I couldn't possibly have PMR as I was too young - een though I had classic symptoms and classic response to Pred and even blood markers. As I've said in other posts eventually a PET-CT eventualy confirmed I did actually have it all along. I'm sure there are different forms of PMR and the one you get when you are young is 'atypical', but nonetheless it is PMR and attitudes like this and rheumatologists getting it wrong have caused me so much grief and stress in my PMR journey.

[Daisyfield in reply to tangocharlie]

Thavk you. Sorry to sound ignorant but what are they looking for in the scan. How is it confirmed?

[tangocharlie in reply to Daisyfield]

See this recent post for sme useful pictures. Basically they are looking for inflammation in the classic areas - shoulders and hips/groin. The bursae around the joints tends to be inflamed rather than the joints themselves

healthunlocked.com/pmrgcauk...

[bakingD]

Excellent talk only age mentioned as for PMR usually 65 and over!

[Estellemac]

This is great works fine thank you!

[Sydney0503]

This was excellent, really helpful and still makes me question my diagnosis ...

[clover-4]

Very interesting and thank you for sharing this. Prof. Dasgupta appears to suggest that with no shoulder pain, one cannot have PMR. I have never had shoulder pain or stiffness. I was diagnosed with PMR in March 2020. I had severe stiffness and pain in pelvic girdle and CRP reading over 100. 15g Prednisolone worked magically, and I am now down to 5mg Pred. with normal inflammatory markers. But now I am wondering if perhaps I have never had PMR at all, and could there be something more alarming lurking inside me.

[PMRpro Ambassador in reply to clover-4]

He is dancing out of time with a LOT of other rheumatologists over many years. On his criteria I don't have PMR despite me scoring very highly on the other international criteria. They certainly haven't identified anything more sinister in 15 years!!!

[clover-4 in reply to PMRpro]

Thank you PMRpro. I do value your comments.

[Caro12line in reply to PMRpro]

He is dancing way out of time with correct diagnosis and treatment of his own patients! Talks the talk. It ends there.

[123mossie]

Excellent, thanks for posting.

[MaritimeMags]

Thank you Jack Marsh. I have only just come across Dr Basgupta in the last few months. I would certainly like my GPs to see listen to your chat about PMR. I was diagnosed three years ago but, apart for initial presentation when I ached all over, have never had all the other symptoms described. This led me recently to ask for a referral to a Rheumatologist as I felt I did not have PMR. Have been on a very low dose of Pred for most of those three years, with dose being decided after Doctor has result of blood tests.

[tangocharlie]

Very interesting. I would like to know his sources for some of this, eg that PMR is very rare in under 65s and if there are no inflammatory markers. He doesn't say it is impossible but that i tis is unlikely. He also talks about inflammatory arthritis which he says is often misdiagnosed as PMR. I'd like to know how many members of PMRGCAuk were under 65 when diagnosed. I'm also curious, as I am in that age group, whether that means we are more likely to have 'long PMR', and if so, why?