Posted , 10 users are following.
I had an epgmri this week for the rheumatologist, this the doctor who is convincing me I no longer have PMR, and she said it came out clean with no vascilitis or polymyalgia. Is that a test you guys know about, or is she trying to convince me some more? I think she is right now, by the way, even though reducing the pred. makes me feel so much worse.
0 likes, 7 replies
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susan29426 DebbieHurts
Posted
First I've heard of it. Hope there is a test. If the pain lasts only a few days, it's probably Prednisone withdrawal. If longer, PMR.
EileenH DebbieHurts
Posted
In what way does reducing the pred make you feel worse? And what pred dose are you on at present?
I'm not a radiologist - but I'm far from sure that any form of imaging can really show evidence of PMR - if it did then they would use it in diagnosis. PET-MRI DOES show the inflammation foci - providing the patient isn't taking more than a very low dose of pred at the time, 5-10mg is enough to suppress the emissions that identy the inflammation.
In PMR it is acknowledged that it is a vasculitis - but I really don't know that anyone has ever shown the condition of the capillaries supplying the muscles. I'm seriously sceptical - but would be delighted to be told otherwise.
However - whether you still have PMR or not is immaterial. You have to get off the dose of pred and if your adrenal function or something else is interfering with that she has to identify it.
DebbieHurts
Posted
Thank you both for your comments. I am taking 17.5 mg right now. When I try to reduce as I did a few weeks ago down to 15, I became stiff and painful from shoulders and hips downward. I am going to take your dead slow method into show her this time, and I know I've got to make it work. The doc is also having me tested to see why I am still taking oxygen (ever since back fracture operation months ago). I surely would like to improve my health.
DebbieHurts
Posted
I'm also to go see a endocrinologist about the adrenile glands. I don't know how they test that, do you?
EileenH DebbieHurts
Posted
They test the adrenal function by taking blood at 9am to get a baseline cortisol level. Then they give you an injection - it may be into a vein or a muscle - and take another blood sample half an hour later to see if the injection stimuated the adrenal glands to make cortisol (as it should). Sometimes they do another few blood samples at intervals. My mate in the north of England went to sleep in the recliner chair and missed it all!
The stiffness and pain MIGHT be steroid withdrawal - some people simply don't get on well with reducing their dose any faster than 10% of the current dose. At this stage that would be 1.5mg, you are trying 2.5mg which really is quite a bit more. Steroid withdrawal will improve over the follow 2 or 3 weeks at most, some people are quicker.
Taken them some time to wonder why you still need oxygen!
Anhaga DebbieHurts
Posted
I tried to post this hours ago but the website was acting up.
https://patient.info/health/synacthen-test
Babazaga DebbieHurts
Posted
I had GCA, not PMR, but no matter which---I took Prednisone for 18 months. I would definitely go very slowly reducing the Pred dose. Percentage wise---as you go down you are reducing by a larger and larger percentage of the dose, A variety of nasty effects that are potentially dangerous can result from reducing too quickly. Be patient.
Best wishes,