Battle with GP’s

[Body_bonkers]

Felt some relief when latest GP said her mother had PMR but after yesterday’s appointment she seems as incompetent as the rest. Been back on 40mg three weeks and no better and GP seemed unsure what to do until I mentioned concerns GCA had been missed. She defended her colleague who tried to drop my dose 40/30/35/25 every week and said the medical guidance is to reduce quickly (rheumatologists would surely disagree ?). Unfortunately I could not bite my tongue and said this is precisely why I’m now have to go up to 50. Being pressurised to start drugs to prevent osteoporosis before first DEXA scan and stuff for the stomach lining. Had no problems with the latter yet and then there was the expected your ‘pre-diabetic’ but thankfully she said we can monitor before needing yet more drugs. I’ve asked to be referred to NHS rheumatologist but will probably be waiting years. Would feel very alone and scared if it was not for this charity/forum so thank you all for your help and support, Feeling bit angry at the moment and not sure I can entirely blame the steroids !

[DorsetLady PMRGCAuk volunteer]

She defended her colleague who tried to drop my dose 40/30/35/25 every week and said the medical guidance is to reduce quickly (rheumatologists would surely disagree ?)

Of course she defended her colleague, and yes on high doses [once all symptoms are under control] it is relatively easy to reduce more quickly [but not weekly]. —but I’m not too sure about Rheumies either!

So what is the plan going forward - until the time you get to see a Rheumy ?

No wonder you are feeling angry…no surprise, but the steroids don’t help either🤨

[Body_bonkers in reply to DorsetLady]

GP wanted to taper me off the steroids completely until I protested and said I could barely wash/dress/walk etc. just two months ago and even now with slight relapse about 80% of the pain and stiffness has gone. She suggested I should accept that until I raised GCA fears. Seeing GP in fortnight and I’ve made appointments with dentist and optician. Worried about money longer term but will look into cost for private DEXA scan and possibly seeing private rheumatologist

[DorsetLady PMRGCAuk volunteer in reply to Body_bonkers]

If you have at least 70% improvement then that’s classed as a success.. but obviously GCA made her think again.

If you are thinking about paying to see Rheumy then raise a new post stating roughly where you live and ask for recommendations…. If you look online you’ll get an idea of DEXA scan costs.

[Body_bonkers in reply to DorsetLady]

Thanks DorsetLady. Pondering whether to see the same private rheumatologist who suggested steroid treatment for PMR. GCA is not on his 'list' of treatments but you would have thought it should given the close connection

[DorsetLady PMRGCAuk volunteer in reply to Body_bonkers]

Certainly should be aware of it -at least would hope so.

Worth a try I would have thought…

[autumnlass in reply to Body_bonkers]

Hello - I wish you well. 🫂.

I see a rheumatologist privately about every 3 months and he charges me £100. I think the initial appointment last October was £150.

I also do DEXA scan privately and I’m charged £120. 2022 prices for both each consultation.

I live in East Anglia. x

[Body_bonkers in reply to autumnlass]

Thank you autumnlass - that sounds reassuring

[PMRpro Ambassador]

The steroids will be playing a role but she seems to have misunderstood the reducing pred quickly concept. You can't reduce the pred until it has the symptoms under control and if there is ANY suggestion it may be GCA she should be referring you as an emergency to the local rheumatology department - similar to the speed with which a stroke would be referred. GCA is a medical emergency.

Offer her this to consider

rcpe.ac.uk/sites/default/fi...

which is the taper that Prof. Vanessa Quick is still using at Luton Hospital where she is a GCA specialist and does research. The drops are similar - but MONTHLY not weekly!

If it is "just" PMR and 40mg is doing nothing after 3 weeks, they are out of their depth with the diagnosis and they need expert advice.

[Body_bonkers in reply to PMRpro]

Classic symptoms + lots of blood tests + private rheumatology consultation recommending steroid treatment for PMR + miraculous initial response on 40mg and yet two GP’s are still expressing doubts. This may turn into something else in the fullness of time but learning about some of the more unusual symptoms and the way this impact’s people’s life has given me confidence to challenge

[PMRpro Ambassador in reply to Body_bonkers]

The trouble was that 40mg is a high dose for "just" PMR and it muddies the waters since other things will respond to that much, However, if this is LVV/GCA in hiding - you need someone who knows what they are taling about because they probably don't.

[123-go in reply to PMRpro]

Brilliant article and one to save!

[TJ70]

I have been fortunate enough to go private - my GP surgery were completely ignorant on PMR. My rheumatologist started me on 40 mg due to to GCA fears and 18 months later I’m down to 3 mg which I will stay on for 3 months as I did for 4 mg. This site should be made compulsory reading for GPS 😊

[Body_bonkers in reply to TJ70]

It was actually a young visiting registrar that made my provisional diagnosis. She printed information on PMR for me to read and although I recognised what I had become on those pages, did express concern at 'normal' blood tests but she shook her head and said - I've had patients with normal bloods and so referred me to rheumatology. I will always be grateful to her and hope it is a sign that younger GP's are more informed. I also went private to the PMR diagnosis but not sure if he was on the ball with regards GCA