Care for GCA reverting to GP from Rheumy?

[Noraflorence]

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?

[Sharitone]

She was too busy.

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?

[DorsetLady PMRGCAuk volunteer in reply to Sharitone]

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.

Well after the initial fiasco, that is.😊

[Noraflorence in reply to DorsetLady]

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.

[DorsetLady PMRGCAuk volunteer in reply to Noraflorence]

Certainly some get through better than others- but we are all different so I guess that’s no surprise…

[Noraflorence in reply to Sharitone]

Yes I managed to keep polite in spite of my dismay!

[PMRpro Ambassador]

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.

[Noraflorence in reply to PMRpro]

Thank you I will see what she says next time. I hope to have clarified what the GP can do and who may have heard of GCA at the practice.

[Noraflorence in reply to PMRpro]

Sorry to hear about your son in law, I do know what pressure the NHS is under. 2 years is a huge wait.

[DorsetLady PMRGCAuk volunteer]

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..

[Noraflorence in reply to DorsetLady]

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.

[Noraflorence in reply to DorsetLady]

Thank you I suppose it does make sense to prioritise new and more urgent cases.

[DorsetLady PMRGCAuk volunteer in reply to Noraflorence]

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 -

econsult.net/nhs-patients

Hope it works out for you.. 🌸

[Noraflorence in reply to DorsetLady]

Thank you for the link, I have just checked and as I suspected it does not. Very much an arms length practice with an 'us and them' mentality

Thank you for the good wishes, fingers crossed and I shall not mention to the rheumy what she planned in our last meeting. See how it goes.

[DorsetLady PMRGCAuk volunteer in reply to Noraflorence]

Yes that’s all you can do ..they have off days as well!

[piglette]

I hope your receptionist is not diagnosing brain tumours, if she is discounting all headaches!!

[PMRpro Ambassador in reply to piglette]

My thought exactly!!

[Noraflorence in reply to piglette]

Would not surprise me they are/ she is very knowledgeable !!!

[PMRpro Ambassador in reply to Noraflorence]

Think of the money the NHS could save is they just took on more receptionists like her to replace the doctors ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

.. not to mention a boon for undertakers!

[PMRpro Ambassador in reply to DorsetLady]

Maybe they'd take out shares in a company ...

[Noraflorence in reply to PMRpro]

Maybe they already have! Some movement towards privatising the GP practice as well I suspect. Receptionist will need to go on a course I imagine.

[Sophiestree in reply to DorsetLady]

We had a standing joke in our family as my father was the local GP and his brother the local undertaker!!!!

[Sophiestree]

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.

[Noraflorence in reply to Sophiestree]

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.

[RoadTrip]

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.

[Noraflorence in reply to RoadTrip]

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.

[PMRCanada]

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.

[Noraflorence in reply to PMRCanada]

Thank you PMR Canada. I hope it works out but from past experience getting blood works from GP is a challenge