Is there any protocol for when the care of a Consultant for GCA ends? After nearly 3 years I am on 3.5 mg pred.
I have an ambivalent relationship with my rheumatologist and fear she finds me too assertive/abrasive!! At my last consultation face to face in August she said she wanted to refer my care back to the GP. She was too busy. I paniced as I have a very large and busy GP practice and it took several weeks before I had my original GCA diagnosis (Headaches are not urgent said receptionist). In common with most surgeries it is virtually impossible to get an appointment with a GP and while I don't really rate the consultant I am at least in a system which provides some informed structure and blood tests.
I have an appointment with a GP in four weeks time just before my telephone consultation with the rheumy. I want to argue the case that I should remain with the hospital and to canvass the GP's view. Can anyone help with a common understanding/ guidelines for care from a rheumy?
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Noraflorence
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What? Too busy for half-an-hour a year? Poor dear. and here are we thinking that seeing patients was a consultant's job. I believe people with GCA always have a consultant while the disease is still active. They're the only ones with access to some of the treatments, for a start. I hope your GP baulks at that, too. Any chance of switching to a different one?
I believe people with GCA always have a consultant while the disease is still active.
Most do, I didn’t, apart from first few months - and then it was an ophthalmologist not a rheumatologist. The ophthalmologist referrred me back to GP, but did suggest I saw a Rheumy. That took another 6 months and he wasn’t very interested as my GCA was well under control by then. He looked over the tapering plan my GP has suggested - and said that looks okay, so you don’t need to see me. However that was before TCZ was in use…so I was only on Pred.
I managed quite well once on Pred, no flares, but then I wasn’t rushed to reduce. Having read a lot on here about some Rheumies, I’m quite pleased with my lot but I may have been one of the lucky ones.
I know you have had a very poor experience but have come out the other side to help us manage this voyage, so grateful to you. There has never been a suggestion that TCZ is applicable to me so far. It does seem that it is really up to the patient with this disease. Thank good ness I found this site.
I hope you disillusioned her and reported such an attitude. Headache: incipient stroke, cerebral bleed, brain tumour, and of course GCA. And a load more.
Actually, I think it is fair enough to discharge to GP care at this stage. And yes - consultants ARE exceptionally busy, that's why the waiting lists for rheumatology for new patients are months, even years, My son in law has had to wait the best part of 2 years for a first appointment. That is despite the fact that inflammatory arthritis is best managed when treatment is started early.
As you are down to 3.5mg and have no issues, then I can understand that your Rheumy may consider it appropriate to refer you back to GP, and then she can spend more time on more complex and/or new cases, but her comment she was too busy is not appropriate.
But you do need to have confidence in your GP surgery..
Yes that is my plan to see what they/ GPs may offer and how to get past the receptionists who are notorious. One has to be on redial at 8 am for any appointment so energy and vigour are required.
Well I guess so, but it could have been handled much better and professionally by her. Does your surgery have eConsult? that makes life a lot easier - if you aren’t sure you can check here -
I wish my consultant had said that to me. I dreaded every appt. But can see why you might feel it's not a good fit for you. Perhaps a different consultant? I'm sure someone on here could recommend someone in your area.
Sorry you have dreaded your consultant's appointments they are all so different.
Thank you, I have friends who have another consultant in the same place and who get a different more positive level of care.However having consulted here got good advice and now at a relatively low dose with no current issues.and also recognising the demand level I will wait and see what transpires.
I was discharged by my Rheumatologist after a year (for GCA) by mutual agreement. Since then I have effectively been managing alone, for the last 2 1/2 years, requesting repeat prescriptions from my doctors practice when needed. They just recently reviewed my records when I requested some PRED and I think panicked ( esp. as I told them I am moving) as I have had full bloods, pneumonia vaccination and strictly told to speak to them every 3 months. I was happy just reducing, am around 5 mg from 70 mg.
I think we are indeed left to get on with it. Interesting that your practice suddenly sprang into action for some reason. This level of help ought to be available and I will try to get this if necessary, Remain a bit sceptical.
As long as you are not on any steroid sparing medication (which a rheumatologist prescribes and monitors), and you can reliably get your pred prescription from your GP, you should be OK.
I got monthly bloodwork done by my GP and now my rheumy. All results go to both.
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Helpful guideline from my Rheumy
Depression from GCA or from prednisone
GCA OR STIFFNESS FROM PMR
Caring Rheumy Required 
GCA update from California
