I upped the dosage back to 1 mg yesterday and felt way better. I emailed my primary care doc (I think you there refer to this one as a GP) who immediately said I need a slower taper just as you said, to go with what my body is telling me. I'm lucky to have him since the rheum seems to think the adrenals are not a concern and that I am over-reacting. The medical system in this country is really breaking down. Many doctors, including my pc doc, are charging what they call a "concierge fee." which comes to a couple of thousand dollars a year or more. So I did that and sure am glad I did since he has been wonderful -- I don't know what I'd have done without him once PMR hit. Even without the fee he was responsive, but now I can always reach him even on weekends. It has come to a bizarre situation where specialists seem to literally focus just on one part of the body as if it's not connected to the rest -- if it wasn't so frustrating, it would be almost comical.
Once when a blood test result hadn't come into the system but the rheum had his assistant call and tell me there was a problem with it, the other doc has an assistant that knew how to hack into the lab's website and see the results! And then he called the rheum, who hadn't responded to my questions about it. We have come to see things like that as a miracle, a far cry from when I was growing up and the family doctor handled almost everything.
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DL is more often than not right - it pays to listen!!!
There is something seriously wrong with a healthcare system where money buys a better response but I suppose it is understandable. However, it seems to have improved your care and that is worth it for you. It isn't quite the same in Europe but there are occasions when choosing to pay a bit helps - I'm very lucky, though my rheumy is in great demand all over the world now which takes him away quite often. Your guy sounds like a treasure!
Well, of course it feels good to help others -- even when new to PMR if someone asked a question I'd already dealt with, it somehow lifted the burden a little.
He is. He's what they call a "family doctor" here, which attracts a more sympathetic type of person, attuned to the whole person. When I moved here (LA) a friend recommended him. He and his wife are in the same practice, and his daughter just finished med school and wants to work in an emergency ward. He and I joke about the rheumy, refer to him as "his majesty." He's even asked to see photos of my paintings, so I emailed him a few. I have tried to get the point across to the rheum that a patient's emotional needs, especially with a new diagnosis like PMR, is as important as the drugs, and I can see that he tries but it just isn't in him.
If I must compare the 2 systems, U.K. to US I’d say there’s not much between them other than the obvious $$$
Having been treated in both countries I’d say the PCP Primary Care Provider I managed to find in California was fantastic and she was so caring, thorough and accessible. Also very affordable. I wish she was in U.K.!!!
The rheumatologist I also saw there was cheaper than the one here I paid to see, and he was brilliant! Literally brought me back from the brink of an awful emergency situation. However the ER I was admitted to was hopeless, despite it being extremely expensive.
Unfortunately since returning to U.K. and our “Broken System” I have not actually managed to see a Rheumatologist F2F other than when I paid to see the same one I’ve waited 6 months to see on NHS as an urgent referral - it’s a joke/insult.
So I guess my experience on both sides of the pond shows just how varied and unequal medical systems can be according to where you are.
I’ve been extremely disappointed to find when I really need our NHS after many years, it’s just not been there for me at any level but I do appreciate areas vary greatly.
I'm trying to work out the best way of a partial return to the UK while retaining the medical care I am entitled to in Italy. Given I am on medications that must be supervised by a specialist and can only be handed out 2 or 3 months' worth at a time, not quite sure how I would cope with months of waiting for the NHS!!
Yes, of course -- there are good and not so good doctors everywhere. I feel I've been lucky to get good care here when I've needed it. Mainly I was speaking here to a change I've seen over my lifetime. And the cost of prescription drugs is criminal.
There DEFINITELY is a lot wrong with our health system compared to a decade ago, a slow but sure decrescendo since then is what many of us are experiencing. A shortage of new doctors and nurses reached a zenith during COVID. Medicare cuts have resulted in many doctors only accepting private insurance, so of course the elderly are the ones who suffer most from that. And now they are buried in paperwork and have to hire extra help just for that. We are something like 10th in the world for quality care.
A friend who has been told she's in the danger zone for heart and should see a specialist right away can't get an appt for months even though her GP has an employee specifically to be calling doctors to try to get their patients in sooner. I realize other health systems have this problem, but it didn't used to be like that here.
I think the hospital-centred systems have some benefits - if you are admitted as an emergency from the ED, you will be seen by the hospital cardiology team. If you need emergent care, it is there on site.
The whole world is struggling with healthcare capacity - not least because of us Boomers who have transferred from providing care to needing care in large numbers over a relatively short period. But there is no excuse - it was to be expected you would have thought!
Yes, you would have thought! For awhile I worked as an academic advisor in a major university and was surprised at the lack of space in the med schools for qualified students. No thinking ahead. But then, at least in this country, being old is treated as a liability. I had a wonderful doctor in Oregon who warned me, when I was moving here and looking for a doctor (at that time had no condition of concern -- PMR hit a few months later) that a lot of doctors don't like old people. Guess they think they'll never get old. I am in a hospital based system, and the problem is if I want to see someone outside the system. I can, but then the communication between doctors is questionable. And LA is a huge city and the smaller hospitals don't have offices everywhere.
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