oh well don’t feel any wiser at all waited 6 months seen rhumi today. How are you! I have a few questions I said.
mum on 10mg pred now and decreasing. He said ok I want you to come down 1 mg a month until you get to zero. I said I’d prefer to do 0.5 mg to make sure I don’t flare. Well You should be down to at least 5 by now.! You’ve been on them since April 2021. Well Iv decided to decrease 0.5 mg a month. I don’t know why you read all that stuff on your pmr sites they are guessing! Ok I said but I feel better doing that. Then I said my osteoporosis gives me a lot of pain. He stops me here. No no osteoporosis is a painless disease. I said well not from where I’m sitting. Then as I was expected he wants me to take AA I said no I’m trying the natural route. He contradicted everything the last rhumi said. At this point I just listen. Because of my GERD and history of ulcers he said in a call don’t take AA. Then said oh well try prolia. I declined. I said when do I need to take into account Adrenals. Oh don’t worry about that. When I see you on 6 months I hope you be down to 4/5 mg pred. I sai ok and appointment was over. He said I should not listen to anyone except him. I’m qualified they are not. I said you haven’t walked a mile in their shoes but ok if that’s what you recommend. I DONT THINK SO.
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Uglow
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Glad you can't hear the names I'm calling him!!......do as you are slowly, .........and don't return if you can help it...not sure what county you are in, but sure there is someone not too far away who you could see if needs be.....God luck....
Guessing are we - guessing a darn sight less than he probably is!! We actually have personal experience. One of the top PMR rheumies in the UK thinks we know plenty too. AND she is of the opinion that 2 years for PMR is a myth ...
He's probably only seen patients who don't go back to see him after more than a year so he doesn't actually know whether they recovered or just avoided his know-it-all lecture!
He's the let-down Uglow! It's very trying to say the least when we wait and wait for our appointment and then are dismissed with very little or no satisfaction. I wonder how many PMR patients of his have reached zero Pred in one year 🤔.
Oh dear Uglow, what a waste of time that was. Thank goodness you know your stuff. My Rheumatologist endorses this forum, as do other good ones. He didn’t care did he? It’s very sad and disheartening. Do you really need a Rheumatologist? Is your diagnosis just PMR alone? Any GP could do what he did and hopefully with more information and care.
I told my GP that she could give me more info than the rhuemy and that isn’t a lot but at least she is friendly. I rely on this forum for my info and help
Hello, I had a similar conversation with my Rheumatologist a couple of months ago. It was a telephone conversation, she said ‘last time I saw you’ I pointed out she had never seen me in 2 years but she had only spoken to me on the phone. Eventually I told her politely it was my body and she she signed me off to my GP. She said she would write to him evidently she hasn’t as I’ve not had a copy of her letter and no confirmation from him. There is so much help and information on this site by experienced caring people and I’m so grateful for that. Take care.
Dreadful ! Seems like most of the ones i have seen over my time, i am seeing a new one in a couple of weeks time and if hes like the one you have seen and my previous ones , i wont be going back. These people are meant to help and guide you , i feel like you are wasting their time ! I have sat in an app before in agony ,only to be told they dont have a answer ! Hope you get sorted out . I have never come across this in any other sector of the NHS .
This is what I have often wondered in the past...do patients with other diseases get this treatment...I have seldom in my life been rendered speechless, but the Rheumy before the one I have now was so right in his way of thinking....says he...that my sister who came with me looked at me to see what I was going to say....but I thought he wasn't worth wasting my breath on!......I had some idea first time I went in his room....stayed facing his screen, never looked at me........
Thank heavens for the rare very good ones that I and some others have found....
i think a lot of them don't count PMR as worthy of their attention - because of this ingrained belief that it only lasts 2 years, causes no lasting damage and should be easily managed with pred. And take it out on us. It may well be that the triage doctor who sorts out the referrals DOES realise PMR isn't short and simple which was why you weren't turned down - because some places will.
Oh no....I hope not!.... What do you or others that know him think about that?......
This is precisely why I am not bothering to try and get a referral to a rheumatologist who will know nothing about Stills Disease unless I’m on my knees. I’ve managed for 43 years since diagnosis without one although of course Stills is not PMR. Good for you, stay strong to yourself and enjoy the care and attention on this site. 😀
Oh boy!!!! What a numptie. I hope you are OK. If your rheumy had seen my father trying to hide the agony in his hip caused by osteoarthritis maybe he'd change his tune.
The arrogance of some medics is mind boggling. He criticises you for reading other patients' experiences. Pity he doesn't do the same and he'd find that PMR doesn't go by the book.
Easy to be a Rheumy.?...9-5, or less, no w/e work, no emergency call outs, same old treatments, no individual patients as one size fits all approach...does that attract a certain type of person perhaps.....I know there are some good ones....but...
I came to that conclusion - and having chosen rheumatology they discover they can't ride in as a knight in shining armour and save lives and earn undying adoration and adulation from patients. They can rarely cure since so much is autoimmune and their job is to walk the walk and support the patient as best they can. Not glamorous at all. They need to be curious and have a detective mind - but that can be hard work...
No its exactly the same as when i first went , i was told by a certain person that they were flaky at best and maybe find my own one ! Just not practical for me. As i have said if this new one does not work out ,i will not go again and carry on with your taper and my GP, 🌷
Yup, I'm not searching anymore, it makes you feel so low when you come away in pain, knowing all the effort it took you to get there was such a waste of time !
Sorry I'm in Norfolk so couldn',t advise . I agree with you about seeing a Rheumy and making you feel worse, it made me feel low too.....Think maybe you are right to be guided by your GP and definitely this forum!......
Thank you I will, I suppose I have been doing this anyway ,with the help of Dorset lady's taper and my GP. But really Dorset Lady and myself if it comes down to it !
I might need to take you up on that in the future, so I will thank you beforehand ! Im doing ok so far on your tapering, will see what I have in-store with the new Rheumatologist in the first week of August xx🌹
Hi the usual disappointing stories about supposed experts in their field. My rheumatologist has advised the 'must get to zero Prednisolone ASAP' message even in the face of me reporting increased agony. He is baffled by my last years worth of blood tests revealing normal inflammation level and decide I may have been misdiagnosed with PMR over 3 years ago! I do have the added complication of osteoarthritis all over but it does feel I've been abandoned as too difficult to treat. Thank goodness for this site 🥰
For goodness sake - the normal markers are showing the pred is doing what he prescribed it for: to reduce inflammation!! The utter ignorance of some of them is mindboggling!
Possibly you are on not quite enough pred for a good result - does a slightly higher dose work better? You can have some inflammation present causing symptoms without the markers being raised. The inflammatory substances must be around in the system long enough and at high enough a level to trigger the body to produce the proteins that raise the markers. Some people never mount that acute phase response as it is called, or not enough to raise the markers outside the normal range - doesn't mean they aren't raised for that patient though. Mine should be low single figures, in a bad flare ESR bumbled along at 16-18 so raised no suspicions. Mine CRP only rises in response to cardiac issues. In other patients it happens before diagnosis but once on pred it just doesn't happen - no-one knows why, it is just so.
And myofascial pain syndrome can have that effect without ever raising the markers because the inflammation is not systemic, it is localised in the muscle fascia and in the trigger points it forms so doesn't trigger the acute phase response.
Why oh why do rheumys disregard the experiences gathered on this site, they would clear their waiting rooms if they bothered to invest time reading here.Maybe they are worried they’ll be out of a job!
3 years ago when first diagnosed blood test revealed raised inflammation and put on 30mg prednisolone. Tapering down once I hit 20mg pain and stiffness returned with no further markers in blood tests to this day. Following rheumatologist advice to continue taper am now at 8mg prednisolone. So for over 2 1/2 years been in constant pain and stiffness. I guess if I took 20 my prednisolone again I would be free from pain but that's a dose rheumatologist won't sanction!Covid didn't help, working full time, being nearly 74, nor osteoarthritis, with pain or fatigue!
Rheumatologist has decided may not be PMR so ordered further blood tests and mri 6 months ago. Mri still to arrive. No diabetes but now have high blood pressure. GP got me to test 7 days and averages 195/80 just waiting to speak to GP(a complete pain in itself to arrange with telephone appointments when at work!grrhh!)
I will read up on your suggestion re myafascial pain syndrome thank you, looks interesting
Took them long enough to decide it may not be PMR - which is something I'd have wondered when you first had problems with pain at 20mg! However - my rheumy accepts this is PMR and not anything else even though I have needed heading for 20mg for the last more than a year. Mostly because of stress during Covid and caring for my husband during his final illness - but that did make a massive difference and still hasn't really resolved.
If you have continued to work though that almost always means people need more pred.
Hi , what a ignorant sod , you should have said that’s the problem you are reading off a book , we are a community of people who all relate to one another and are living it everyday so who knows best , I definitely would not see him again.
I have an appt with my Rheumy on Monday .....dreading it as she has exactly the same views if I mention advice from the charity or forum. I'm certain she won't be happy with my slow taper to 4mg since June 2020. Wish me luck !!
It will depend on the name he makes for himself in the field. Publications, reputation for getting good outcomes. Which is why he wants all the GCA patients he can find and have a tight hand on their management.
Remember clearly being in waiting room last time I saw him, with a lady with GCA, dreading going in to see him because she still has pain, and he wouldn't like it!!....but she had followed his fast plan.......very smiley when he opens the door...then........
Pity there isn't ratings for medics for patients to see.....before we enter the trap....
Same with my first visit (which may be my last). She was very arrogant and condescending. "Come back in 4 months and let me know how that tapering schedule goes, which isn't going at all". I prefer the .5 mg at a time pace. So we shall see. Waste of everyone's time and she was 1-1/2 hrs late, which by her reviews, is her norm. All the best.
Sorry to hear about your disappointing rheumy appt. What a waste of time. Good job we have this forum to come to.I have at last been given a telephone appt on the 9th Aug. Not sure what they will say as I have been doing much slower taper like you. If I had followed their plan I would have been off by now. Trouble is my GP has left and we only have locums if I get discharged from the hospital. Could be dodgy getting future prescriptions.
I really hope that you find a more sympathetic and understanding rheumy Uglow. Its bad enough feeling poorly when you don't feel that anyone is listening or indeed understanding and trying to tailor your treatment according to what is happening. To be fair to my rheumy, he lets me email when I am having problems and he phones me back. I see him privately but I only pay for actual appointments. When he phones me he will spend as long as I like answering my questions. Last week I was trying to look into the future and see what my options might be depending on response to current meds. I said 'I know you'll tell me what to do next but....' and he said 'I think your body will tell us what needs to happen next'. Given the experiences of others, I was very comforted by his response. Hang on in there and keep your chin up.
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