I saw my rheumy yesterday, the one that told me there was nothing wrong with me but age (I am 56), then a month later my left hip collapsed from AVN... who told me there is nothing wrong with my right hip but age, my surgeon told me I am early stages AVN in that hip...
so, yesterday, he told me to either stop taking my pred all together, or come down by 1mg per week... I am currently taking 6mg, and have been trying to taper rather quickly because of the AVN at .5mg every two weeks... he laughed, and said that wasn't fast enough... I said I was worried about adrenal failure, and he said that was a myth.....
I have tried to get a referral to a different rheumy (UK), but he is the top honcho, and, it seems, no-one else wants to go against him...
I am starting a Pain Clinic today, so, am hoping to get a chance to ask them, but might be difficult as it will be everybody's first day and I don't want to hijack it....
Polymialgia is so difficult to manage....
thanks, any opinions are gratefully received... xx
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It makes so angry and sad that this is happening, I had a rheumy that put me in dreadful pain when I did his plan ...very quick drop, in the end he said....you lower Pre d your way, I'm here if you need me....I said I'm doing it my way anyway....I
It is absolute ignorance his comment about adrenal failure....in fact dangerous!
I would be looking for a more competent Rheumatologist. This one sounds incompetent to the point of dangerous arrogance. Which part of the country are you in? My GP did not put up resistance to my request for a PMR specialist Rheumatologist in another town. I was pursuing excellence, not fleeing ignorance. She started from the very beginning with the most comprehensive case history that I have ever experienced.
My recent Synacthen Test has shown Adrenal Insufficiency after less than 3 years of PMR dose Prednisalone. I am not being regarded as a myth and have been referred to an Endocrinologist. Stick to your sensible taper plan and good luck at the pain clinic. Let us know how you get on?
I’m breathless. Has he tried Googling the subject?? I think my Endocrinologist would have something to say, but consultants do seem to be loathe to criticise their peers. Telling a 56 year old that their hip pain is age, implying it is a cross to bear is worrying. How old was he? Anyway, what makes him top honcho, good reviews or some sort of assumed status from the fact that there is an anagram of ‘what a pillock’ in all the letters after his name? Sorry, rant over. Just goes to show you still get the rants on just 3mg, it just lasts for a shorter time than on 30mg.
I don't believe it!!!!!!!!!!!!!!! Well, I do, but nothing surprises me any more. Adrenal insufficiency after pred therapy is NOT a myth, there are at least 3 people on this forum alone whose adrenal function is totally shot and a few more struggling. And 6mg is plenty for the body to cope on so there will be no signs yet.
See your GP, get a load of 1mg tablets and try reducing 1/2mg per week and see how you get on. Make sure everyone around you is aware and if you start to feel unwell stop reducing and contact the doctor. If you are REALLY shaky and unwell, dial 999 and say it is a possible adrenal crisis - they will send a paramedic with the needful. Write a note with the details - duration of pred therapy and doses and why you are stopping and keep it in your handbag and a copy by the phone with emergency contacts. Then relax and get on with reducing,
If your GP is really good (and I doubt it if they haven't found you someone with less of a god complex) they might switch you to hydrocortisone which should be easier for getting adrenals to wake (but not necessarily).
So there is a queue at the Pearly Gates and a doctor is getting a bit fed up waiting when a guy in a white coat and a stethoscope hanging round his neck swans past and gives St Peter a thumbs up as he jumps the queue and goes in. The doc gets a bit uppitty and asked St P what's with the fast lane and the white coat. "Oh, that's God - he likes pretending he's a doctor..."
Good idea perhaps we should make a list from our experiences...after all we recommend them, why not name and shame them....amongst ourselves of course!!😏
thank you for all your advice... I will continue with my reduction of .5mg when I feel I am over the hang over from each reduction... it is really important for me to get off them as soon as I can without becoming bed bound from the pain again... I am always in rather a lot of pain, but the agony of avascular necrosis is, for me, marginally worse than the trauma of PMR... my rheumatologist is Mr Selwyn Richards .. he is head of the rheumatology department in Poole (so I am told)
I am so sorry about your pain. My GP was very keen I should go to a rheumatologist rather than an orthopaedic surgeon although I had horrendous pain in my hip. In the end I discovered what I needed was a good orthopaedic surgeon not a rheumie. You say you have seen one, were they the one who said you must get down to zero pred and adrenal glands are fine or was that the rheumy? Personally with hindsight I would try and get on the list for a hip op and bypass the rheumie. I went on for months in pain because of the rheumie and I still feel angry about it.
yes, thank you for telling me your experience... it is the rheumy that is giving me the steroid, (just stop taking them), advice...
I have gone over his head and requested to see the same orthopedic surgeon who replaced my left hip again, and have an appointment in the next few weeks....
I, too, feel as if I have wasted the last two years with this rheumy... I told him over 18 months ago that I thought the problem in my shoulders and hips was mechanical rather than arthritic... he told me last week... I think you need to see an orthopedic specialist, I am not sure this is rheumatism... I could cry... I have been going around in circles trying to get better advice, or a referral to another specialist... I feel I have got caught up in some kind of ego trip/meglomaniac rheumatologist and the fear everyone else has of him, so they won't agree to see me.....
to be honest I have lost all faith in the medical system....
Having had a similar mess up, I was so pleased I finally actually got my GP to apply for funding for my hip and then I was able to see the orthopaedic surgeon who put me on the waiting list. It seems that you can now go to the orthopaedic surgeon with the rheumie’s blessing. It will be great to get the same person who did your other hip? Good luck.
Pity I didn't go with you to that appt. I would've told him about his myth theory. Was on 2mg Pred, feeling fine, no fatigue. Synacthen test showed Addison's disease. MYTH, Hmmmmmmmm. My foot!!!!!
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Alendronic acid & DEXA scan
MRI results from having groin, thigh, pain
Report from my visit to the rheumatologist 
Avascular Necrosis of femoral head (AVN)
Positive rheumy appointment
