The GP who is looking after me and who I have never met, only phone calls, is unable to answer my questions . I guess she is not vey familiar with PMR. I asked for a Rheumatology referral but apparently this is not standard practice for PMR and cannot refer me. Is this others experience in England?
I can pay for a private referral but I will wait until I can have a face to face appointment.
Luckily these pages are really helpful. Thanks to everyone.
Written by
Marigold3
To view profiles and participate in discussions please or .
No it’s not standard practice & if everything is going OK then your GP can look after you but if you run into problems or your PMR becomes problematic then they will refer you.
What questions do you have, we maybe able to answer some of them in the meantime or suggest you do ask for a referral.
It is only officially suggested for patients who are atypical or who experience difficulty in tapering. Rheumies think patients should be referred, some GPs claim they can't prescribe pred without a specialist say-so - which is tripe - so it must depend on practice guidelines.
Some private rheumies are doing f2f private work - Rod Hughes in Chertsey did an article in the Daily Mail bemoaning he was being stopped from seeing NHS patients because of Covid restrictions and he has been seeing patients privately. So if you want to go privately, ask for recommendations here and see if they are actually meeting patients - you might be surprised.
As the others say well over fifty per cent of those with PMR never see a rheumatologist. Asymptomatic people do, but also if the GP does not know much about PMR and needs help or the patient goes privately as they do not think much of their GP. You may be able to get a private face to face appointment, but in some cases rheumatologists are not that great a godsend.
Given the risk associated with what they do it isn't surprising I suppose - but in recent years I have come to the conclusion that there are a lot of rheumies who wish they'd done surgery ...
I was under care of local doctor for over a year. We spoke each month & discussed Pred dosage & how I was feeling. On the phone, not in person. I found his help & knowledge excellent. When I developed inflammatory arthritis he referred me to a rheumy who was helpful, but we didn’t have time for any discussion on PMR at all. I guess it all depends on knowledge & enthusiasm of your local doctor, perhaps. I never felt the need to see a rheumy & have read more criticism than favourable comments about them (on the whole) on this site, to be honest!
My GP in Surrey referred me to a rheumatologist in Oct 2017 on first going to see them after struggling for 5 weeks with increasing pain and impaired movement. I have been seeing rheumatologists ever since. May be worth going back for another discussion?
I think sometimes folks need to vent due to the debilitation and fatigue we face on a daily basis. We just aren't the same as we were before PMR and all wonder if we'll ever get back there again, as it goes on for so long. However, it doesn't do to overly criticise, it may make one feel better for a short period but negativity just rusts the soul and drags one down. In the main doctors are doing the best they can to help their patients. Open, clear, constructive, concise feedback on how they come across and make their patients feel can be helpful. However, it can be hard to give when one gets upset by any hints of misunderstanding, heavy handedness or lack of understanding the disease and being up to date with the latest research.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.