I have been trying to get an appt with an endocrinologist and didn’t realize it would be so dang hard. Finally my Rheumatologist wrote a referral and today I get a scheduling call. Well apparently this endocrinologist has never heard of Polymylagia Rheumatica and she won’t see me. I only spoke to nurse and explained that it was important for me to have my adrenals cared for just like I would ask a cardiologist to care for my heart. The response was they don’t treat long term prednisone usage for treatment of Polymyalgia Rheumatica.
I am so frustrated.
Written by
Adoldfart
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Eh? So who are you meant see for adrenal insufficiency, orthopaedics? To give any benefit of the doubt, perhaps the referral letter was badly worded and it sounded like they want the Endo to take over the management of PMR as well or your dose is still too high for them still. Or not..
Sorry to hear you are having problems. Are you in the UK?
It would help a lot to have some background info. Will you put a bit more on your profile, please? - when diagnosed, starting dose of pred, tapering, etc. Have a look here for tips:
I'm not surprised to be honest since few endocrinologists would care for patients on long term steroids that is not for primary adrenal insufficiency (where it is unlikely the patient will ever get off pred) until they were down to below 5mg pred. Many patients DON'T have problems tapering off pred and their adrenal function returns slowly. There is nothing an endocrinologist can do before that stage - and their role is likely to be getting the dose of pred down which they would usually do by switching to hydrocortisone instead and it doesn't manage PMR inflammation particularly well so it descends into a battle between the needs with you in the middle.
Late to the party. I laughed out loud at your title. I have an old friend who was with Doctors Without Borders (MSF) for a few years as a logistician in many places you wouldn't want to holiday. My GP (who is French) was in West Africa with MSF and met his wife (a Kiwi who was also working there as a logistician) and ended up settling here.
Sorry to year you are plagued by border walls, aka specialist discipline boundaries. I've been lucky in that my GP sent me to a Rheumatologist for a second opinion when I was first diagnosed, mainly to rule out any other autoimmune problems which might be lurking under cover of PMR symptoms. Other than that I'm just under his care, and he is very good (patient and symptom centric) in his approach from what I can tell. So far I don't seem to have had any adrenal issues, and am hoping it stays that way. I've just completed a very DSNS taper from 4.5 mg pred to 4.0 mg pred.
Was there something specific which has happened for you which might be adrenal? As PMRpro mentioned, an endrocrinologist wouldn't usually get involved unless there was a specific problem detected.
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Very Disappointed. letter from my controlling Doctor 
Doctors orders to reduce prednisolone. 
