Rheumy appointment - not sure what to think
Posted , 10 users are following.
So, I had my much anticipated first appointment with the Rheumy today. I'm not sure what to think. She's not too convinced about the PMR diagnosis. Says I'm too young and should have been well by now if it had been. Also do not think I have GCA (age). They have ruled out the ANCA-vasculitides and SLE with blood tests.
I asked about the possibility that it might be Takayasu's instead, and if they would consider a to do some imaging of the arteries. She said she will check my history with a team meeting later today and they would decide how to proceed. Might not be of much use to do that now as I have been on pred too long. Perhaps the only way is to go off the pred all together, wait a few weeks and THEN take new blood tests and do an MRI/CT/whatever. She will contact me next week to let me know.
I feel a bit "homeless": back to square one. Hope it's alright with you that I stick around the forum for abit even if I might not have PMR after all. Frankly, I need the your support. Oh, how I would love to have something treatable.
Marie
2 likes, 24 replies
tina-uk_cwall marie09535
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How frustrating for you all this uncertainty must be. Let's hope her group talk comes up with a decision that sees some tests done that resolve your issues once and for all. All the best, christina
mary68968 tina-uk_cwall
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mary68968 marie09535
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jillyy1955 mary68968
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tina-uk_cwall jillyy1955
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mary68968 jillyy1955
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MrsO-UK_Surrey jillyy1955
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EileenH MrsO-UK_Surrey
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Where I would agree with Marie's rheumy is that the response to pred is not typical of simple PMR and this is something that is all too common where GPs know half a story - that PMR responds to pred. Then they can't be bothered to read that it responds to a moderate dose and any patient needing more than 20mg to get a dramatic and sustained response belongs in the hands of a rheumy - and all it needs is a very quick google to find that out.
MrsO-UK_Surrey EileenH
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EileenH MrsO-UK_Surrey
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I trust Mike will not be cashing in the statin prescription? Who cares what the HDL and LDL levels are - the total is quite reasonable. Since when is vit B12 associated with cholesterol? And she could have done it by phone - much more quickly
linda17563 EileenH
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EileenH linda17563
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I'm really not a vindictive person - but I hope one day they get PMR. Badly. Even at the top doses the expected response is 70% - that leaves 30% or possibly pretty awful pain left that doesn't respond to anything else. I have my own theories on a lot of that but nevertheless...
ptolemy MrsO-UK_Surrey
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MrsO-UK_Surrey linda17563
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MrsO-UK_Surrey EileenH
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You've guessed right, Eileen - his prescription for statins has been filed!! his Vit B12 she called him in about is "borderline - buy a supplement OTC"; his "Vit D is low - double up on present pill, taking one twice a day". As you say, it could all have been done over the phone.......and wouldn't have taken nearly as long as the precious 7 minutes!
MrsO-UK_Surrey ptolemy
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ptolemy MrsO-UK_Surrey
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