Finally ran into one ... My rheumy is retiring, so I'm switching to another doc at the same practice. Before I do so, however, I had to meet with a nurse practitioner.
Reviewing my pred use (I'm at 4.5 after a long, slow process with the occasional flare), she very firmly stated that I need to reduce by 1 mg every 2 weeks. I was pretty speechless.
My old rheumy was quite content letting my endocrinologist take care of the pred, and she was more than happy to let me go as slow as I liked.
My Endocrinologist won’t do a cortisol test until I am down to 3’5 mgs of Prednisone. I don’t know if it is worth attending my appointment with him next week. I am not well with Long Covid. I would not be dictated to by a nurse. After 9 years of these diseases, I know exactly what her suggestion would do to me.
Makes you feel as though you’re banging your head against a brick wall, doesn’t it? If I were you, and if I had a good supply of Pred, I would carry on with the tapering method I knew would be safe for me until I see the new rheumy and/or write to the nurse telling her of your intention due to the very real real risk of adrenal issues if you reduce your medication at the rate she suggests. Stand your ground and fingers crossed the new rheumy will come up trumps (no pun intended!)
She trying to kill you off? Obviously needs some education.
There needs to be a school to re-educate them all!
That is so true. Very frustrating that most do not understand the nature of our illness. It is bad enough having either PMR/GCA without having to fight for our care and treatment.
Oh no!!! Thats just dangerous. Im seeing a new rheumy next week so dont know what im in for!! Can you hang on til you see the rheumy??
My last rheumy told me to get from 3mg to zero within 8 weeks max. I had to fight for that, he wanted me off in six weeks. He said if I felt sick again like I did last time I tried to get under 5mg, I was just to plough through it, & not to increase at all. Just fyi…not all rheumies are ‘equal’! Fortunately I have an excellent GP.
My GP is very much of the pass you on to a Consultant type. Cant imagine her actually making a decision on anything. No im not exaggerating!! Fine for an antibiotic prescription.
Not helpful, really…but OK as long as you have a good consultant. Sad, though, as PMR doesn’t really need consultant care, I think about 70% of people never see one (I have never been referred to one for PMR, was supposed to be discussing inflammatory arthritis that day). Theres no need to see one, really. Most people can handle it through this forum without a GP, too! Partly why there’s such a long waiting list to see a consultant, too!!
My rheumy used to be very assertive and of the 'plough through it' fraternity..but after making my point ,backed up by research on this forum, we now have more of a partnership in care....at the moment anyway! Stick to your ground, politely and firmly...and take care. X
If it were me I’d make an appointment my your endocrinologist and discuss it there.
First Rheumy visit.
Am I reducing too fast?
Rheumy leaving practice, yet another search 
Long term steroids
