You may be surprised at this, especially if you have been a patient of his. This is something we as patients have suspected for a long time so it is only fair to acknowledge his work confirming it!!!
The presentation of GCA can change over time - and if he bothered to listen more closely to his patients, he'd know that PMR does too. Just because a patient doesn't fit the image they have doesn't mean it isn't GCA or PMR that is resurfacing as he makes them taper to order. I can only hope that patients get a better deal.
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I'm glad that doctors are finally starting to actually listen to us and learn from patients. This was the 'expert in GCA' rheumatologist who did a talk a few years ago at the PMRGCAuk AGM pre Zoom days and was absolutely adamant that GCA went away in 100 weeks, to guffaws of disbelief and incredulity from the audience many of whom presumably had had it for longer. I'm sure he has learned a lot since then.
I have tried the tapering, up and down, finally a few years ago I quit trying! I’ve been on Prednisone for maybe 15 years, now at 75 , I am on 5 milligrams and that’s where I’m staying! Thankfully Prednisone hasn’t affected my bones to get any worse than they have been. My Dr. is fine with me staying on 5 milligrams indefinitely!
If I could get to 5mg, that's where I'd stay too! Currently 7mg but with Actemra - the thought of losing that is not encouraging me to return to the UK!!
Why is 5mg seemingly regarded as such a benchmark? It’s not so far from 7mg…..Is there a specific reason why 5mg is better thought of than 7mg, if you see what I mean?
It's lower. The lower the better. That is all they say. For years it has been thought at 5mg there are next to no adverse effects - more recent studies suggest it isn't that simple but if they are happy, so are we!!
Good for you! After five years with GCA....I got to zero...big deal....I crashed one month later and I've not been the same since. I wound up with infusions on Pred for three days and 60mg a day since, just starting taper. IF I get to five...that is where I'll stay. At 84, I may stop at 10...or who knows, I may not reach it. Good for you to stick to your guns!💞
I'm sorry to say this but if you look at the facial expression it tells a lot about the character of the person. More concern about self than others. In consultancy I learnt from day 1 that all the answers to improved productivity resided in the existing staff if you knew what questions to ask and listened to their experience. The same applies to medics. You may have expert skills and knowledge but listening and observation get to the root quicker
At the weekend it was almost as busy as in summer! Friday was an Italian and Austrian public holiday - and a lot weren't using it to visit family graves which is the traditional duty! As I drove back the motorway was chocca from Bozen to Verona as the Italians headed home. Coming north seemed OK but I used the ordinary road anyway. It was lovely - quite a lot of hotels and restaurants had already closed, others were about to close on Monday after the long weekend, but on Saturday night I sat outside to eat as the restaurant was full. They had radiant heaters and it was OK.
I wonder how many cases of GCA he's actually seen. East Anglia is a small place. Although I remember him saying it was good to study that area because people don't generally move to and from it so you have an interesting gene pool. That got more laughs
I also remember in his presentation him saying "The first step in becoming an expert is to declare yourself one" which I thought was very witty. He was obviously ambitious to make his mark on something even then
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Professor Dasgupta at Rettondon meet today - what a good talk he gave...
Light on the horizon?
Patient edication
