Hi Everyone
Just briefly: Guys Hospital Rheumy has discharged me back to GP as nothing for a year under them has helped my symptoms. Diagnosis from them also is "Auto immune rheumatic type disease with lupus like symptoms"! (with other complications)
Do any of you manage, are you happy and is it a good idea to not have any Consultant back up?
I am also aware that as a patient I was using their NHS resources with no health gain to me so for them it made sense to discharge me.
Lin
Lin — I do not think you should see yourself as a waste of the NHS resources. Even in the U.S., where we are guilty of over-use of sub-specialists, rheumatologists are encouraging internists to manage mild lupus patients. I will try to find the article for you. There is a world-wide shortage of rheumatologists, and from what I read recently in “The Wall Street Journal,” the U.K. Is already losing EU doctors because of Brexit. Both the U.K. and the U.S. are tackling the shortage of specialists by sending GPs for intensive training in areas like neurology, rheumatology and dermatology. Yes, resources are an issue. But you likely will be carefully followed by your GP and will be able to see the rheumatologist if needed. My internist was actively involved in monitoring my mild undifferentiated connective tissue disease. Any new symptoms were explored, blood and urine tests done to watch for kidney disease, and there was communication with the rheumatologist when needed. I probably would not need to see the rheumatologist regularly if my internist had not retired years ago. So I think you are going to be in good hands with a good GP. Also, my cousin, who has moderate but straight-forward lupus has opted to be treated by her internist now that her rheumatologist retired. She is doing very well on short term prednisone when she flares. Make sure you have a GP you have confidence in.
Hi Lin! You're ANCA positive?!? Prof D'Cruz is well-respected but maybe you should see a vasculitis specialist? Especially with ENT symptoms? Seems pretty poor to say 'we've not managed to relieve your symptoms, so we'll discharge you to primary care'...Dr Jayne in Cambridge comes recommended....the nose variety of vasculitis (GPA) is notoriously tricky to diagnose, but ANCA is a huge prompt....it's not something a GP can deal with
DO push for specialist care...ANCA is a red flag. Keep us posted! xxx
...especially when GPA could be involved.... a treatable illness that can have quite an impact....Lin, please feel free to PM as I've had untreated nasal problems currently assigned to SLE (as ANCA-negative), but with unpleasant consequences xxx
I’m very shocked that you’ve been passed to your GP for ongoing care. I’m not sure why I’m shocked as my GP is simply amazing and it is she who does most for me. However, it is she who is learning from me and not the other way around . . I hear some shocking stories of GP’s who know very little about lupus and don’t actually have any interest. It’s potentially a dangerous move. I wonder if this is something that’s going to happen more and more? My previous GP’s had no interest in helping me and I remember feeling very alone and vulnerable - I relied very heavily on my rheumy nurse during this time
For the first 10 years after being diagnosed by a rheumatologist I had no further appointments & my condition was handled very well by my excellent GP. I have now moved to a new area & have a new GP who referred me straight away to a rheumatologist, which was very good for my peace of mind, as I got the impression this GP knows little or nothing about Lupus. I had a very productive rheumie appointment. She's very happy with my progress & doesn't want to see me for a year, but has given me a number to call if I have any questions or need any help. So, depending on your symptoms , it is possible to manage without regular rheumie appointments. Hope it works for you.
Sending you to the rheumatologist also established a relationship with him. After that, you are still his patient and both you and your GP continue to communicate with him. Every patient is different. It just does not make sense when there are severe shortages of doctors to have rheumatologists, cardiologists and neurologists seeing patients when their input at that particular moment is not truly needed. They have so many complicated, unstable patients to see. It is inevitable that new more efficient models of care are going to be implemented. Already in the U.S. nurse practitioners and physician assistants are taking over a lot of care. Patients seem to pleased. And it frees the doctors up to focus on the complex cases. Any one of us can become complex, so it is to our benefit!
The same thing happened to me 7 years ago l was under Professor Hughes at London Bridge and had 6 monthly appointments. He referred me to Lupus Centre NHS who saw me every year l always had lots of bloods done. I was discharged to my local hospital in Kent who know nothing about lupus, my yearly appointments were moved to 18months. I have now been diagnosed with PBC which was missed by my consultant who never took the fact that my lfts were out of range for 4 years
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