I have had PMR for 9 yrs, most of the time I have managed my symptoms ok. Over the last six months I have experienced acute finger and wrist pain which is quite debilitating. Today I had my first face to face with a rheumatologist for five years !! I explained I was experiencing a bad flare which had lasted well over a month and told him of my hand condition…… I was somewhat taken aback when his advice was to reduce my present dose of 5mg (which is not effective) down to 4 mg.
I asked him to explain his reasoning, he explained that my body made 3.5 mg itself, so with 5 I was really having 8.5 daily….. I was so shocked I was lost for words… he then agreed to me having a blood test….. his parting words were, stay on 5 if you have to and he will get back to me after blood tests.
I was so annoyed, upset and feeling cast aside I sat back in the waiting room and cried…
When is PMR going to be taken seriously?
Written by
Jeanlindenburn
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Well never mind THAT - when are doctors, the so called experts, going to remember their physiology lectures!! You are on a sufficiently high dose of pred to SUPPRESS your adrenal production of cortisol so your adrenal glands could be producing next to NO cortisol. And if you were on 8.5mg in total (which you aren't) and have symptoms, then that doesn't mean you need less pred, it means you need more. What a clown.
In your place I would be contacting PALS to make a complaint about how you were treated and requesting a second opinion, quoting what he said to you. Because that was wrong at so many levels.
I think it's probably more likely they have no real idea or up to date information about PMR and the use of steroids in the long term control of the inflammation/illness. To go with that there are those who don't appreciate or are able/willing to accept the views of someone, not even a fully qualified doctor, who is prepared to challenge what they say, even with evidence. They are the "expert" what they say has to be correct and you have no right to challenge it. Fortunately there are many very good doctors/rheumies/medical staff out there looking after us, getting on with their job that we never/rarely hear about.
Thanks for the corrective that there are many excellent doctors out there Bcol 😊 I’ve had some wonderful care myself, that has saved my life on more than one occasion…..
Maybe acute care like oncology and cardiology tends to be better, whereas PMR falls into the ‘chronic’ category, not so life threatening, (although GCA is potentially life altering as many on here know.) May be institutionally we’re just not high priority, although as individuals we know what a problem PMRGCA is..
I have experienced both.......very arrogant, listen to me, do this, lower quickly, and if you are still in pain it's not PMR..often patients in waiting room dreading seeing him!..Finally saw a Rheumatologist, that listens, discusses, has answers when things not working......such contrast......and only 3 doors away from each other!....unbelievable.....
I’m so sorry you’ve had this experience. I agree with PMRpro, it’s inaccurate, unhelpful and totally unnecessarily dispiriting. Do complain, I think it needs more of us to do so. Although I have never complained myself and I know that sinking feeling after a similar appointment.
sounds so familiar, I have been on pred for 8 yrs, I started a taper from 5 to 4 mgs March/april of this year, could be coincidence but developed many issues since then, a lot of pain mainly started in June, now all over joints and muscles, hands very bad, fingers also, Ive never had raised numbers in inflammation markers for years, Ive had MRI, s ultrasounds exrays, which all showed osteoarthritis, back, hip, hands now severe in hip , ( back been bad for years) my rheumy still says get off pred,of course it s a painkiller but worst medication, as I asked about increasing temporarily to see if could get some relief, since cant take any other anti iflammatory med while still on prednisone, only tylenol which does help in chronic pain, havent seen in perdon for over a year, have virtual appt this Monday morning, I am going to stress the daily pain Im having again with him, hoping he has some better advice tan tapering more
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