diagnosed with pmr 2018 been on pred all that time twice tapered to 0 and had to go back on. Been tapering 5mg to 1 mg 7 months. Feel dreadful. Fatigue like never known, stiff arms,shoulders, thighs, groin(hip?), hands, wrists. Sleep almost zero.
Gp totally ill informed about pred and pmr. Been referred to rheumatica 5 months ago but not even an appointment ( Shropshire)
When I was diagnosed was my shoulders and hips and was in utter agony. Pred cured it and at 5 seemed to control it. These stiffness in the places I mention and fatigue- is this likely pmr as my Gp just wants me off pred but am almost bed bound and no specialist appt on the horizon. Gp wont let me go back up on pred. Amon1 mg.
anyone comment please
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Barry2007
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Is there an alternative in the practice? Is a single private rheumy appointment an option?
And frankly - what you describe sounds to involve a fair bit of adrenal insufficiency which is hardly surprising after the time you have been on pred. But the history sounds very PMR-ish and it can last far more than 6 years - I've had it 20!
I ve been banging on about adrenal insufficiency so GP referred me both to endo and Rheumy byt 5 months later no appts. Its so hard to know wether if Gp lets me go back up on steroids or what to do what is the treatment for adrenal insufficiency. My Gp says no such thing
She to,d me to stop steroids at 5 mg as low dose and low dose steroids are not a problem it’s the strength off the dose whereas the research I have done is also the length of time.(6yrs for me). Been left alone all that time but right at this moment I wonder if I am dying. I am so despondent and feel so helpless. Last October I was cycling 50miles a day 2-3 times a week. Today can barely stand but complicated with being diagnosed with peripheral neuropathy. And like the rheumatology no appointment in 5 months to date
Are you saying your doctor told you to just stop steroids when you were at 5mg? If so I am totally speechless. No wonder you are in such pain. Can you see someone else?
She is totally wrong I fear - and it makes me concerned about her abilities. Stopping steroids suddenly at 5mg after 6 years ABOVE 5mg would be criminal negligence if you ask me. As piglette says - did she go to medical school!!!!
DSNS is under Tapering in the FAQs. The link to them is via the box at the top of every thread under the post. Then choose the appropriate alphabetical page and scroll down it.
All she really needs to do is a basal cortisol - a blood sample taken between 9am and 1pm. That indicates where on the scale of recovery you are. 5mg is definitely plenty to suppress adrenal function so why on earth she thinks it isn't heaven only knows.
See this re adrenals and what happens to them when you are on steroids - and you need to reduce steroids slowly once you get to low doses to nudge the adrenals to wake up again..
Would say a combinations flaring and adrenals struggling (fatigue is typical symptom).
Any possibility of seeing another GP in surgery - one that has a better understanding of PMR etc. Most would say that that reducing from 5mg had been much too quick -that when you need to slow fine for your illness and your adrenals
See this re adrenals - and your GP is putting you at risk of an adrenal crisis… he needs to be aware of that..
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