Forum friends - please try and refrain from giving medical advice! I know you know a good deal more about PMR and GCA than most GPs do, but what we don't have a good knowledge of is all the other conditions that somebody might have! We are not in a position to say to somebody we have never met - 'start your steroids again', when a person's rheumatologist is telling them that they don't have PMR or GCA. No doctor would do this and we shouldn't do it either.
PMRGCAuk can't take responsibility for unqualified medical advice that is given on this forum. Please bear this in mind when posting!
Thanks.
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Polywotsit
PMRGCAuk team member
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Kate, I have replied to your other post regarding this issue on the thread "Polymyalgia is it or isn't it".
Hi Kate, I think you are politically wright in what you say but one member of the site has a tremendous knowledge of the condition PMR. One does not have to take the advice given but it does provide some information which the patient can discuss with their respective doctor. It would be a sin to ban the member from submitting their experience and advice. A bit of o problem I know!
Like Celtic if you think I have overstepped the mark in a response I apologise.
However, whilst I agree we are not medically trained - lots of people on this forum have a vast experience of PMR GCA and therefore are more than willing to give advice. I hope your post doesn't inhibit that.
I think you'll find that most contributors say at the end of the advice given - talk to your doctor, but go armed with the info you have been provided with.
Dorset lady and PMR pro and all of you I would be in serious trouble if not for your. I mean it. Late makes a good point but I have never seen anyone overstep a point. You are always careful and measured and wonderfully well advised. Please please keep this forum as it is. A lifeline xxxx. Linda xxxxx
Absolutely am not asking people not to give advice, just to be aware of where the boundary is - the caveat 'talk with your doctor before changing your dose' is enough to keep everybody safe. These forums are valued by sensible doctors because they provide a huge amount of patient education and support and the docs know that we are probably cutting down the number of surgery visits people need to make. It's worth remembering that there are doctors who are members of the forum and drop in to read posts, partly to learn more about patient experience. Anybody can sign up and we don't know who they are!! We need to keep the medics on side. So every now and again, as administrator, I have to post a reminder - if I didn't I wouldn't be fulfilling the role properly.
Kate. I can't begin to tell you how important these folks are to me. My doctors didn't know herpes was something one could get from GCA and that it raises CRP numbers. If I didn't learn from this forum they wouldn't know how to treat me. I bought them your book as well. I can properly be an advocate for myself and my treatment because of the very important things I have learned from some extremely brilliant people who share their experience and knowledge with us just like yourself. To be at the mercy of physicians who know very little about us or how to deal with prednisone is dangerous. We need this forum. Thank you for all you have done. Please continue. Marilyn
kate lots of us depend on the advise some of these well knowledgable ladies . and after all it is only advice weather we take what they say is entirely up to us, but I for one, would be at a loss without these forums. and I am sure many of the others would be in the same position. so please don't stop there posts. they are a lifeline to to all of us, and if the ones who don't like there advice, don't go on the forums to read them. sorry if all this sounds a bit rude its my opinion I love these forums
Yes I totally agree with you and Nap1 - these forums are invaluable. That's why we started it up and why it is doing so well. And it is great for us to share experience, knowledge, information and tips. We just have to be careful not to step over the line.
Kate is right, remember that she must remind us occasionally about do's and dont's. That is her role. Please don't let us get like other forums (no health ones) where bitchiness and bad feelings build up, we all need this forum too much for that to happen.
Kate, most important message. I've been concerned about this topic on several occasions, but never voiced it. I'm glad you have. Sharing experiences is useful, important and interesting. Thanks.
I totally support your post. I decided early on, before discovering this site, that my fabulous consultant would manage my steroid dose. The equally fabulous GP manages everything else. A bit of tension originally but now all I have to do is do as I am told re the meds, ask for help when I need it, and save my free thinking for the rest of my activities.
My consultant is very responsive to any call for help that he gets. This has developed into total confidence in GP and consultant.
Note.. interesting .. most PMR people on this forum are under a Doctors medical advice and care . The questions they ask are directly related to the advice of their GP or specialist. I try to give encouragement related to the MDs already prescribed orders . I value your advice and will keep this in mind. As a RN I try to be careful with my recommendations as there are many people on this site with much more experience than I ... thought for sure. Best wishes.. Leilagirl.
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