Podcast - Prof Dasgupta

[Miserere]

You may already have seen this but it came up on FB this morning.

youtube.com/watch?v=vdwjdQO...(Not working as expected?)

[Miserere]

Just realised this is three years old so most will have seen it and perhaps it is a bit out of date? If I notice anything that might be helpful then I share in case it helps.

[AquaZumba in reply to Miserere]

Thank you for attaching. It might be 3yrs old but I'm relatively new to PMR. I've just watched the podcast and found it very interesting and extremely helpful. Although reading many daily articles on here, I feel very lucky to be under the amazing St Thomas/Guys Hospital Rheumatology team. This came about after my GP urgently referred me to my local A&E hospital with GCA symptoms in addition to my initial PMR diagnosis. (CRP 69) However, A&E Dr dismissed symptoms & sent me home on codeine for pain relief.

Deterioration over next 10 days, led me back to my GP who phd St Thomas's Rheumatologist for advice and he asked me to attend immediately. I couldn't have wished for better care. They have been so thorough over the past 4 weeks with so many investigations, bloods, scans, biopsy, etc. Even had a PET scan on New Years Eve & recalled 3 days later with all results. Main diagnosis still PMR with added shoulder complications, cardiac & ortho issues which are all being addressed. Referred physio, appt already organised, together with cortisone injections & a further follow up appt with Rheumatology team.

[PMRpro Ambassador in reply to AquaZumba]

Hope the A&E doctor was informed of the error of his ways!!!

[AquaZumba in reply to PMRpro]

Good question 🤔

[DorsetLady PMRGCAuk volunteer]

Yes I have -but always worth a look for those that haven’t-thanks

[byebyebicycle]

Hi All, I hadn't seen this podcast before and I found it very interesting and informative. However there are a few points I would like to share with you.

Firstly my PMR started not as bilateral and was confined to my left hip for the first 6 months during this time I visited physio's and my GP several times. I was given exercises vague explanations as to it's coming from your hip joint which especially felt wrong to me but I had no choice to go along with it even though X-rays showed very little deterioration in my hip joints. After 6 months I started getting the pain in my left thigh and then my shoulder which really progressed very quickly to the "can't get out of bed", can't put my shirt on or tie my shoe laces stage - very very painful. Only then was the diagnosis made with the aid of blood tests. Now I'm not sure how an earlier diagnosis could have been made apart from listening to the patient - I knew it was not my hip joint and that it was muscular related but again the jump to a diagnosis of PMR was probably very unlikely.

According to Dr Dasgupta atypical PMR does not exist - that's what my GP thought about my case until after I saw a rheumatologist. I think a Rheumatologist can make that final diagnosis stick with GP's many of which just do not have the experience with PMR.

Lastly, I was dismayed after all the positives I took away from the podcast to hear Dr Dasgupta clearly preach the 15 - 12.5 - 10 mg Pred taper in I think he said 3 week steps. He really should have been much more cautious and advised, even warned, that in many cases this does not work.

thanks for listening and all please keep up the great work on the forum it's my daily read whilst eating my muesli fruit and yogurt before taking my Pred 🙂

[PMRpro Ambassador in reply to byebyebicycle]

Interestingly - those are all points I was talking about to Prof Quick this week - and we agreed with you! She agrees that when you ask the patients and they think back they often can identify warning niggles well before the moment everything set in good and proper. I certainly did, over a period of about 9 months it went from couldn't get my arms above my shoulders, losing my bounce up onto a step in step classes, to thigh claudication using the cross-trainer. I didn't know what I know now back then - but my GP was even worse!! He said I couldn't expect anything else at "your age" - I was still just 51 when it started and exercising every day!! The next stage was the hip pain that felt as if I might need a new hip joint - which was going to happen at 53 - but turned out to be bursitis as part of PMR>

However - sometimes a GP will agree there IS something not right BUT is still blinded by the image that has been conveyed by Baskhar and his mates that PMR is a one-siz-fits-all typical patient and management so get the answer wrong.

Prof Quick said in a Fast Track PMR Clinic she found that GP diagnoses of PMR were right about half the time - and of course she didn't see the times they got it wrong the other way, not recognising PMR when it was. And unfortunately, at present, the likelihood of seeing a rheumy when you have PMR is minimal - the system is bunged up enough already. But what the good rheumy can do if it really isn't clear is get a PET-CT scan done before pred - and it turns up some surprising confirmation at times.

[byebyebicycle]

Thanks PMPro, In defence of my GP he has adapted and does listen to me, presumably learned something, and leaves me to decide my taper as the Rheumy suggested. I'm not familiar with Prof Quick - maybe I should do a search and find out more.

There is a small issue that bother me. Stiffness is not what I describe as the feeling that I have - it's a muscle type ache and not stiffness and that ache deepens as I exercise both in shoulders and hips but also my calves. Maybe this is my bodies take on PMR. I can bend and stretch much as previously but what stops me is the ache - is this what people refer to as fatigue ? Forgive me but I've only a year's experience with the condition.

thanks for the support.

[PMRpro Ambassador in reply to byebyebicycle]

The calf ache - does that appear after a while when you are walking? Goes away when you stop and starts again when you walk again?

Prof Quick is a Prof in Rheumatology at the Luton and Dunstable hospital, specialises in GCA and is now a Trustee of the PMRGCAuk charity.

[byebyebicycle in reply to PMRpro]

👍

[DorsetLady PMRGCAuk volunteer in reply to byebyebicycle]

In my book, ache isn’t fatigue… Ache is minor pain in part/parts of the body - fatigue is overwhelming tiredness that knocks you for six…

[byebyebicycle in reply to DorsetLady]

Well DorsetLady by your definition I've never had fatigue. But I have PMR and I get tired carrying out the previously easiest of physical tasks and now more than occassionally have an after lunch quiet hour to get by. By far my largest complaint is the deep ache in muscles, thigh, calf and to a lesser extent shoulders. This seems sometimes to vary depending on how far I am along on the present taper. Overall I think I'm lucky and coping well because of all your support.

[DorsetLady PMRGCAuk volunteer in reply to byebyebicycle]

Many get tired…. But the deathly fatigue we take about ln here is usually when adrenals are struggling once you get to lower doses. Although some do suffer from some form of fatigue with their illness and/or Pred, and like you when they are tapering. As we say many a time, its effect is very individual which makes it difficult to be precise on how it should act.

[PMRpro Ambassador in reply to byebyebicycle]

The definition of fatigue is tiredness that isn't relieved by rest or sleep - you can wake fatigued even after a long good night's sleep. You can sit down for a while and tiredness can be lessened - fatigue remains. It is a componenet of almost all autoimmune disease.

There is a brilliant article about Fatigue in my post which DL links in her introductory article.

Here it is as a stand alone

sjogrens.org/blog/2019/13-t...

Most of us can read it and tick a LOT of the boxes.

[byebyebicycle in reply to PMRpro]

Hi PMRP, I just read, well not every word that would be tempting fate as I am not in this fatigue league, yet. Basic, I just about recognise but it was only when I got to the first of the Plus two more i.e. 14 - Fatigue that comes from trying to keep up with family and friends who don’t have a chronic illness. Now this I feel this coming on strong, even my daughter of 40 years, as the grandkids ran amok in our kitchen ok house, said the other day ”you look tired Papa, go take a nap”. I thought I felt OK, great in fact, but on reflection I was tired but only said to myself that I was OK. Maybe you've done that. Anyway thanks for the read, I’ll try again and read every word when I’m not so tired.

But the types of fatigue did remind me of the lorry driver in Hitch Hikers Guide to the Galaxy (sorry if you haven’t read it but it’s worth a try and I’ll bet more entertaining than 13 + 2 types of fatigue). This lorry driver has a logbook to prove that it has rained on him every day, anywhere that he has ever driven his lorry. He catalogues over 200 different types of rain starting from breezy droplets through regular cab drumming and ending in Bucketing Down. Maybe there is someone worse off than yourself 🙃

[PMRpro Ambassador in reply to byebyebicycle]

I have read it - but more years ago than I care to think about!!

Don't try to read them all at once - just do 2 or 3 and go back later. Otherwise it is too overwhelming!