I just thought I'd share my experience yesterday. I'd had a phone call with him in June and from that he ordered lots of blood tests, a chest x-ray. chest CT scan, abdo CT scan and dexascan.
He stepped in the room (only just - stood in the doorway as if he wasn't staying) and introduced himself then went straight into questions about my current pred dose. When I said I was on 10mg (started on 15mg in April) he looked at me like a naughty girl. I spluttered out that I'd had a fall in May then a flare at 10mg last month but then he went into a big rant about my diabetes and started listing all the long term complications of poorly controlled diabetes (which I know having been a nurse for 35 years and a diabetic for 10) at one point I must have smiled or sniggered and he said "it isn't funny, these are very serious issues" at which point I started to chip in. I had to talk over him til he shut up as I couldn't get a word in. He then said my Hba1c was through the roof and ranted again about getting that down. I interrupted him and said it isn't through the roof it is good for ME. He said it IS through the roof, 70 is very bad when it should be 40 (48 is nearer the mark actually) and if I think that's normal then I have a problem, he said. I said I don't think it's good and I'm aware of the problems so what are we going to do?
He then said - you'll love this - as my blood tests were all normal it may not be PMR but could be Fibromyalgia and gave me a leaflet. (I read it - it's not)
I told him about recent intercostal pain and tightness and he wasn't happy about my creaky neck so ordered me a new xray of these areas and a few more blood tests. Interestingly he put on the xray card diagnosis box - PMR on prednisolone.
Good points - 1. he examined me and ruled out rheumatoid but added osteoarthritis into the mix (which I suspected anyway after 35years nursing).
2. He slowed down and got off his lectern and gave me some useful advice on adding methotrexate and folic acid and reducing the steroids. I said I wanted to try to taper pred without methotrexate first which he was quite happy with.
3. Nothing else serious had shown up in all my tests.
I was a bit upset when he left the room but on reflection later I think I needed that. I have messed about trying to lose weight for ever and ever and need to sort myself out. My new hobby is seeking out nice low carb foods and gentle exercise.
I talk to him in 6 months and am aiming to have a lower Hba1c (lower than the rooftop maybe?!) and have lost weight AND be down on my pred dose. I won't say a definitive number/dose because I am realistic but single figures would be a good place to be.
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MiloCollie
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In a way that was not so bad...............however I am in awe as I would probably have lost my temper and told him where to stick his degree in patient communication.
Now about the diabetes, one of the leading researchers in diabetes, published a new diet, earlier this year, called the 'Newcastle' Diet, which all the proceeds go back into the research. You night have missed it on this forum but the link is in the FAQ's (Newcastle Diet) and all I can say, is please take a look at it. This man has done so much research over the years that it just might pay off for you to take a few minutes of your time and read it.
Consultations with that kind of vibe really are horrible aren’t they? I’ve had the ‘scare her with horror stories and she’ll reduce’, ones a few times which are so upsetting because they don’t try to find out about the life behind the patient. It takes courage to stand up to it, so we’ll done. Being a nurse too but somehow never really coming in contact with Rheumatologists, I have been depressed by a certain type that it seems to attract; each discipline has its type. I have met only one great one (emotionally mature and up to date) in the 4.5 years. Interestingly, as a practice nurse who took blood for Methotraxate from countless people with Rheumatoid arthritis, I often heard them extol the wonders of their Rheumy. Perhaps RA is a more nuts and bolts condition and PMR is too nebulous and full of hysterical women?I know you “needed it” but it was lucky you were able to cope with it. The only real ‘weapon’ I had against the scare stories was never putting on any weight and having a good HbA1c. It couldn’t be argued with. I was on a strict low carb and very low salt diet although I didn’t have the energy for any imaginative ways to create variation and fun, just dogged focus. Good luck, it really is worth it.
It would have ME leaving the room - that it absolutely unprofessional and I wouldn't have put up with being treated by someone just passing through. I have seen doctors here since Covid - still in a consulting room, sitting down in a civilised manner and NEVER being treated so rudely. I HAVE experienced an arrogant young woman who was equally rude to me - after 11 days in her "care" my husband was sent home, almost unable to mobilise at all and no better than he was at admission. The following week she saw him after a fall and launched an utter tirade at me, that it was MY fault and there was nothing to be done in the acute setting so he shouldn't be there and she wouldn't treat this. A couple of weeks later he was like the phoenix from the ashes, able to mobilise, eat properly and have a sensible conversation and continues to improve. The change was achieved in 24 hours after a different unit in another hospital treated him - amazing what a pint of blood (Hb of 7.8 and the local unit did nothing about it) and starting him on steroids achieved - both standard management approaches for the underlying problem.
Quite agree, whatever position they are in I wouldn`t be spoken to like that.....such arrogance....First Rheumie I saw said don`t ask questions just listen to me....as I was leaving she said ok?...no I said I have unanswered questions.....avoided her thereafter. My sister with RA had to see her because of her Rheumie being on holiday, she was exactly the same....who do they think they are.......oh yes I know....
Firstly MiloCollie you don't lose weight to please your arrogant Rheumy. You lose weight to please yourself. His opinion is not important in that context. If you genuinely need to then do so and jinasc has given you a very good lead. Commiserations with the meeting tone, same to you longtimer. Unacceptable and PMRpro is right. I would have walked out unless I could make use of him as I can with the cocky one I just saw.
I'm a retired RN with 40 years experience and nearly fell out of my chair when you listed your A1C.....but suddenly realized the UK measures different!y!!! I am in the US and above 6.5% twice is the criteria for a diagnosis of diabetes.....so the numbers over 40 had my head spinning. I have steroid induced diabetes which is now affecting my kidneys...am tapering prednisone and my sed rate is elevated and i am hurting but am given no solution. Please try to get your A1C down....don't try fade diets...I don't want what has happened to me happen to you!
There are several on the forum who got their Hba1c down considerably just by cutting carbs drastically - as we often suggest to people when they start taking pred. You can't control the pred-induced release of glucose from body stores but you can control the dietary intake.
Are you familiar with the Newcastle research and diet?
I briefly read it is a 600 calorie diet....I wouldn't consider that a healthy diet. It would put me in ketosis and being a diabetic on insulin now I don't want to 'play with fire'.
Thanks PMRpro. The Newcastle is probably just what I need. I'm going to plan some meals and buy the stuff in and give it a go. I'll let you know how I go on.
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