i feel the rheumy i am going to, rushes through my visit, doesn,t look at me when talking , on computer inputting info i guess, doesn, want to hear to many questions, says let her do diagnosiing, only she can,t confirm of course pmr, as is typical apparently, isn,t interested in doing some tests i have read are relevant ie, cortisol levels, adrenal gland function, vit D levels, potassium , cholestrol levels(stopped crestor on my own,oct 5, started pred oct 12,),didn,t take BP at yesterdays visit, or check mobility of arms etc, didn,t talk about the reports she requested from my gp,s file, just don,t have the confidence i would like to feel with this new and scary disease, and medication
I had a very unsatifactory referral,too. Actually came home after waiting more than two hours in a scruffy, poorly organised department without ever being seen. I apologised to my GP and said I felt more confident to stay just under his care. He got me through two bouts of PMR and listened to me. I did keep careful notes and a diary for him. Was a bit difident offering my first instalment but he was fine with it.
It's not just doctors who have to sum up their patients; works the other way, too and one you don't trust will be more of a hindrance than help.
Not sure about procedure of second rheumy opinion. How do you find your GP?
You may have read that cortisol and adrenal gland function are relevant - they really aren't at this stage. Vit D, potassium and cholesterol are typically things to be done by a GP, as is BP. If you are making judgements on those criteria, they actually are not particularly important in the overall picture and if you are insisting on asking questions about them you could well have put her hack up.
However - changing rheumy depends what country you are in. In the US it is up to you to find a rheumy, in the UK it is your GP you have to talk to. Are you in the US (since you refer to Crestor while most people in the UK would call it rosuvastatin)?
Knowing what system someone is using changes the suggestions that are relevant considerably so can I ask people to tell us, especially when they are new to the community.
well been with him 10 years, he,s very direct and to the point, he,s always taken me same day for appt, but he is very serious, and feel like can,t spend too much time, but ive never dealt with anything quite this serious, and feel i need someone who can listen to me, ask questions,etc,
but i understood the extreme fatigue experienced daily could be adrenal gland functions being affected , and since i have been off cholestrol since oct 5th, felt was necessary see what my levels are now, of course the prednisone affects all your blood levels, so what good do those tests really do in the end, and i would think when you see your rheumy, other than asking how you,re feeling they would do the basic routine, BP, listen to chest and heart etc, afterall, they prescribed this med, and know it has side affects
Yes, extreme fatigue CAN be adrenal function - but not at the dose of pred you are on which is way above the amount the adrenals make. I've explained a couple of times that the adrenal insufficiency is much later, when you are on a much lower dose of pred. Fatigue is part and parcel of PMR and most other autoimmune disorders and there are a lot of other symptoms that would be apparent if it were adrenal insufficiency - and PMR symptoms, which is what you are complaining about, are totally different.
It is unlikely your cholesterol will have changed dramatically yet - and, as I say, is something your GP should be monitoring. Not a specialist. Especially if you are in the UK - which you haven't told us. In the UK the clinic nurse would check weight and BP when you see the specialist at the hospital.
When a doctor asks how you are feeling they aren't asking as a pleasantry to pass the time of day - they are enquiring whether your symptoms have improved/changed and other such relevant details.
I sympathize Cheryl, under Obamacare I can choose any rheumy I want, so I decided on the only one on the program within driving distance. He sucks, but that's who I get. I go to my GP when I want tests done apart from the usual that the rheumy wants. Better get a doctor on your side; it doesn't need to be the rheumy, but you'd better have some medical professional who at least listens.
FYI Eileen, Crestor/rosuvastatin has recently gone generic, so you actually get the latter now unless you request and then pay more, although Crestor is much cheaper now. My GP took me off of Crestor for awhile to make sure that I wasn't suffering from some sort of statin side effect...it wasn't.
I meant that in the uK we rarely call medications by their brand names - whereas in the US they do, even after the stuff has gone generic.It's just habit. I was attemtping to find out where Cheryl is - it makes such a difference to what i can suggest.
Cheryl - Sorry to hear your rheumie is not forthcoming or as helpful as she could be, but it does happen occasionally.
Maybe if you decide to stay with her, or even if you decide to see another doctor--either way it's probably good to try to relax and not worry a doctor about all the tests you mentioned. Usually PMR is diagnosed simply by a doc ordering a large, say, 20mg. or more dose of prednisone. Thereafter, if the patient is suddenly and remarkably free of (or almost free of) the painful PMR symptoms, then the diagnosis is PMR and you will begin, as you have, on daily dosages of prednisone.
Thereafter life with PMR can be quite a lengthy process, so you'd best help yourself by trying to relax and cease trying to interest your doc in all those tests. Eventually I think you will see that while PMR is new to you, it's not really scary.
Actually - most experts have now decided that the magic response to pred is not necessarily a confirmation of PMR!
I know - when will they decide!
Well that's going to make our diagnosis even more iffy isn't it?
Other things respond to pred too - especially when doctors start with 40mg or even above (which I have heard!). It is a clinical diagnosis - and I have said recently, they are beginning to realise that PMR is not just PMR. it is heterogenous and not only lasts different times - it may also have different causes. So it could be regarded as an iffy diagnosis anyway!
I know the feeling when I speak to my go, he too just carries on doing stuff on his computer, and it seems he isn't listening to what I am saying,
they must be all the same
Unless you have a gp like I do who hates technology. And because of that I haven't yet been able to get my full DXA results from last year.
I think I would be very happy if my GP or rheumy asked how I felt! They both just want to tell me what they want me to do in their opinion. Reducing steroids is their priority regardless of anything else. Mind you I am in the UK!
Did you feel the same in the old days when they wrote it by hand? They couldn't write the notes if they didn't listen - and that is far better than the letters I have had from consultants who dictated it AFTER the appointment and I looked it it and asked "Was I there?" Because all too often I hadn't been...
So when they say "You should..." you could reply "Well actually - I think I shouldn't..." and see how they respond.
I think on the whole I'd settle for advanced social skills before advanced technology know how.