Hi, have had PMR for five years now, with panic episodes of unfounded GCA. I have been on varying dosages of steroids, ranging from 50mg to 15 mg and each time reducing off of them at different speeds. I have been under the care of my gp having seen a neurologist in that time. The steroids have caused a lot of health problems and my gp made an appointment to see a rheumatologist. I have seen him once and am going back in two weeks time. The rheumatologist sent a treatment plan to my gp about reducing steroids and seeing a neurological plus a gastroenterologist. My gp has declined to implement any advice from the rheumatologist and has not made appointments for neurologist or gastroenterologist. He also wanted me to up my steroids whilst the rheumatologist wants me to decrease them. I now have, on top of everything else, steroid induced diabetes type2 and non alcoholic fatty liver. My dilemma is that I am due to see the rheumatologist in two weeks with my gp having achieved nothing of his plan.. The idea of going for my rheumatologist appointment and saying ,” well, no , my gp has not taken your advice on anything “ fairly daunts me. Can you suggest any way forward with this?
rheumatologist and gp have differing views on tre... - PMRGCAuk
rheumatologist and gp have differing views on treatments.
I would do just that - he was the one who sent you to see the rheumy, drop him in it. Sounds like the current government - spend a fortune on studies and ignore the results ...
In terms of the steroid induced diabetes (it usually ISN'T Type 2 but that is a different story) have you tried cutting your carbs drastically. especially processed carbs and added sugar and limiting fruit? Several on the forum have reversed their status in that way. Look at the section on Weight loss in the FAQs which includes MrsNails' story of weight loss and I think also her story about having NAFL which can also be improved with diet.
Never mind the rest - is your PMR well managed at the current dose of pred? Why does the GP want to increase the dose?
thank you for your reply. My gp suggested I increase steroids as my inflammation markers and liver enzymes tests were steadily rising and I was not feeling well. The rheumatologist said that it was important that I do not increase and they must try to get me off steroids. He seems to think there is something else going on.
also for the advice on carbs. I will read the links you have sent me, thank you.
Is the not feeling well PMR-type not feeling well? If you see what I mean? I was already going to suggest you try a different GP - because he doesn't seem to have a brilliant track record thus far!
I think the rheumy has a point about something else going on but he will struggle to work out what while you are on the pred, hence his desire to reduce it. But they are working in directly opposite directions at present and that is pointless.
What dose are you on at the moment?
that makes sense to me . I know that there is some concern as I have tried to get off steroids before and it hasn’t worked well. At the moment I am on 8mg and reducing every month. I did say to my gp that I will go with the advice from the rheumatologist when the gp wanted to up my steroid dose.
As PMRpro asks, what is the GP's reason for going against the Rheumy's [who is the expert in this illness] advice?
..and agree you need to let the Rheumy know what is happening - it's unfair that you are in the middle of this ...
his reasoning being that he knows me better than the rheumatologist. I have told him I would prefer to go with rheumatologist advice and I won’t be increasing steroid dose.
He may know YOU better, but rheumatologist should know your illness better -doesn’t always apply though!
You could say 'Can you check whether my GP has made the referrals that you requested because I haven't been able to see that it has been done.' ... and... 'My GP has instructed me to increase the steroid dosage. Did he/she talk that through with you? Please can you explain the change of plan?'
Why is the GP making the referrals? My Rheumatologist does mine.
I'm surprised - specialists used to be able to refer sideways but it was changed so only the GP could initiate referrals. Maybe it depends on the Trust. It was a piece of nonsense and slowed the whole thing down - which was probably the reason they did it.
My Rheumatologist referred me to 2 different Physios at the end of December 2022.
Ah - think that is a different system. Treatments are different.
My GP would refer me in a flash so she could get rid of me. They don't like dealing with patients at this practice
Seems a bit of a non sequitur - hate patients, be a GP! If you do medicine and don't like patients, be a pathologist ...
My GP was very sweet on the one occasion I met her. She was nice on our 2 phone calls but did say that she had 'given me to Rheumatology' and I knew what was going on better than her. I think she is running the practice that operates under an invisible doctor's name and is overwhelmed.
I almost have the same feeling , as if I am an irritant that doesn’t have a prescribed health problem that they can cure easily
My GP and Rheumy keep passing the buck to each other and nothing gets resolved. Waiting on list for a new GP and would be on a list for a new Rheumy if there was such a thing.
it is such a shame that with our wonderful NHS this cannot be more coordinated
It all started with the decision that GPs would not be employed by the NHS like the rest of the staff. They are private contractors and a law unto themselves.
I have changed gp once already, it is hard to know what to do next.
Well I live in Nova Scotia and our health care system is less than substantial to say the least. I was put on a wait list after my GP of 29 years retired and then I got referred to this quack-a-doo. They will not let me transfer within the clinic and so I've put myself back on the waitlist. He refuses to do anything "rheumy" related and she refers me back to him for my sciatic nerve situation (which given PMR and GCA I think it's something she should address. He is a totally "hands off" doctor and makes referrals for everything, which here in NS could take up to 6 months or more. I'm in the process of needing to know information as far as reducing Pred for GCA and other issues and the only way is to go to an ER (which is terrible burden on the healthcare system). Stuck between a rock and a hard place. Thank goodness for this forum.
This is a horrible situation you find yourself in, Morant. You must try not to feel intimidated by either your GP or your rheumatologist; they are meant to be working for you and not the other way round. They should also be working together on your behalf and not leaving you in limbo. It is your absolute right to ask questions and to expect polite replies with explanations if required. Please have a look at the following regarding good medical practice which should reassure you:
gmc-uk.org/ethical-guidance....
Like others have suggested, you need to know why the GP has refused to implement the rheumatologist’s instructions. I would write a letter today or tomorrow asking your GP that question and for a reply saying you will be discussing this at your rheumatology appointment and want to get the facts right. ***Keep a copy of any reply to take to your appointment ***. If you or a friend or relative would take the letter to the surgery (ask the name of the person it’s handed to) you will be sure that it has actually got there.
You have time before you see the rheumatologist to get your thoughts in order and I would advise you to write down in list form your concerns and questions. Take it with you and read off each question/observation so that you don’t forget anything.
The GP and the rheumy needed their heads knocking together (don’t quote me 😉) !
Another thing is that you can ask your rheumatologist about any treatment plan that he recommends and what he hopes will be achieved so that you can think about things before you agree to it.
Keep your chin up. You will be amazing!
thank you very much for your down to Earth common sense. I am writing the letter as I speak. Wish me luck.
It is so nice to see Primary Care and Secondary Care working so well together!!!
wow. How confusing for you.
it surely is!
..and unprofessional from one side!
yes I agree
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