I had a telephone appointment with my Rheumy yesterday, and basically it didn't go well!! The last time I spoke to her was November 2020, and I have not actually seen her for a very long time. Everything I am doing/not doing is wrong as it doesn't fit within her guidelines, which are reduce 1mg every 4 weeks, and come off the prednisolone. Last November I was going along quite happily at 5 mg, and had been for some time, so obviously this was the right level for me at the time, but she said to come down 1mg every 4 weeks, and wean myself off them as she put it. Well I did obey instructions, and went straight into a flare up, having to go back up to 15mg to get relief from the pain. I am now on 6mg, and using the slow method to get to 5 and 1/2 mg,- she doesn't approve of this either as it isn't in her guidelines yet again!! She said I should not be coming down at 1/2 mg, but should be coming down at 1mg. I told her that I was using this method, as many people with Polymyalgia on a website I was using have had much success with this, at which point she went ballistic, and rubbished the site as not being proven etc. and I did not get a chance to even explain what the site was doing in helping everyone. As I have also chosen not to use Alendronic Acid either, she wasn't happy about that, and mentioned two different injections she recommended I have-can't remember what they were called, but it will be in the letter I get from her in which she said she would document everything I had said in case I had a fall, and badly broke some bones-so I guess this means I am not following her instructions, and this protects her, because she has told me what to do, and I am not doing it. I have had Polymyalgia since October 2017, and I know more about how my body works than she does, so I felt pretty cross with her as you can imagine-just needed to write in and get it out of my system.
I last had a bone scan in January 2020, and although I don't understand the paperwork very well, I know somebody on here will. Right Femur T-Score -1.1 Left Femur -1.0, and Spine -3.0. It also says Spine; The AP spinal BMD result is falsely elevated due to degeneration changes or vertebral deformities throughout the lumbar vertebrae. The true spinal BMD value is likely to be lower. Thanks for reading, I feel a lot better now I have told people who understand our problems. It wasn't really a conversation, it was more being talked at, and only lasted about two minutes in total. I think if she could have put me on the naughty step she would have done.
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Purplegloss
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I saw my Rheumatologist face to face last Wednesday. She applauded this site and my method of tapering, learned from this forum. She is a leading figure in our conditions. I think that your Rheumatologist and her bullying manner is appalling. I came away from my appointment feeling empowered and inspired. I have had 2 positive Dexa scans and do not take Alendronic Acid. I am unable to interpret your numbers unfortunately. I wouldn’t subject myself to that Purplegloss and would be seeking another doctor.
I can’t understand why doctors such as yours would be so threatened by your knowledge. You live with the disease daily and they do not. What good did her advice get you. By reducing to 0 you had to return to 15mg. Don’t be bullied and find your maintenance dose. I fired a gp who told me to not speak unless to answer a question. And by the way he started me on 80mg. And I fired a rheumatologist because he wanted to treat RA and said I didn’t have PMR. Keep looking for a new physician. You are worth it.
I am horrified that a doctor can be so narrow minded, presumably she has a chip on her shoulder in case someone comes along and can manage PMR better than she thinks she can.
I have a GP and a Rheumy (newly qualified) who are determined to stop pred, I’ve not got PMR despite having all the symptoms- their words- and are hell bent in getting me off pred as daft as poss offering morphine as pain control.
I’ve had years and years of every painkiller there is to no avail until I was given pred and bingo result! Opiates we’re his suggestion to deal with pain as pred was withdrawn. 🙈
I know it doesn’t amd promptly told my Rheumy it didn’t as didn’t anything I’d been given over the last 15/20 yrs so what was he going to do for the pain if I’ve got to come off Pred? He said he would talk to my GP and see what she has available 😩😩😩😩. I said the only thing that has ever touched the Pain was pred and that’s your last diagnostic tool in diagnosing PMR! He just looked at his desk 🙈🙈. Hopeless!
Absolutely PMRpro, and it’s only they who don’t realise they’re crackers. We know exactly what is what. I can’t talk and discuss anything with them as they get all defensive and narky amd start laying the law down. 🥲
"Right Femur T-Score -1.1 Left Femur -1.0, and Spine -3.0. It also says Spine; The AP spinal BMD result is falsely elevated due to degeneration changes or vertebral deformities throughout the lumbar vertebrae"
The femoral scores are normal - -1.0 is the reading you would get at 30 years of age and then the bone density tends to fall. Yours hasn't. Which makes me wonder why the spine value is so much different.
The spinal reading would suggest you have osteoporosis but they note that the figure is unreliable as there is osteoarhtitis or other degeneration or malformed bones in the region that makes the reading incorrect. The spinal bone density MAY be worse.
I would be very unhappy about taking bisphosphonates, calcium and vit D supplements may well be all you need.
But i would be hot-footing it away from such a rigid and unpleasant doctor.
Too incensed by that arrogant behaviour. I would tell your GP you want to be referred to someone else. I'm sure if you tell the people on this forum where you live they will have a suggestion even if you maybe have to travel a little. You are ill, you don't need that stress on top.
I think you should ask her to record that you lowered your dosage as advised, had a flare, was in a lot of pain and had to increase your dosage to 15mgs from 5mgs with subsequent delay in tapering. It’s important for your GP to know the facts. Then I would change my rheumy. This condition is bad enough, demoralising enough, without health providers making it worse. 🌺
Oh my dear! How absolutely horrible! You have taken steps to wellness and have confidence in your self which is perfectly correct. One of the most important things is avoiding stress and getting support. Honestly I would thank her kindly and find another rheumatologist. She sounds burned out, poor woman but that is not and must not deter you from finding a more positive and helpful consultant. Stay strong as you are: you deserve better than this. Moving forward I hope you are sleeping and relaxing whenever you can. 😀
Hi, I can’t really help but just to say please don’t upset yourself over one person’s opinion, you know your body and what it needs, stick to what you know best and get help from this forum, everyone is so helpful and know far more how to deal with flares than some rheumatologist, they all seem so keen to get you off pred, I know it’s not the best drug to be on but nor are any drugs.
Take a deep breath and maybe have a word with your own gp, he/she maybe more sympathetic.
My Rheumatologist has kept me on 5mg for the past 7.5 months! I spoke to her this week and we've decided I should try a taper of 0.5mg / month, but go back to 5mg if that fails.
As the others have said - find another rheumy! Where do you live? I'm sure someone on here will be able to make a recommendation.
(PMR since 2016, GCA since 2019, also on Tocilizumab)
Purplegloss: similar to my experience. My rheumatologist didn't like that I refused his suggestion to taper from 10 to 71/2 in one step. I negotiated with my GP, it went well and now GP and I manage the dosage as per DSNS suggested on this forum. Last letter from the rheumatologist stated that I didn't follow his suggestion even though my symptoms are returning - which I have not said (I suspect I have arthritis playing up) and he has said it is best if I am managed by my GP. Just what I wanted several months ago. Arrogant, awful bedside manner, doesn't listen or even give opportunity for dialogue.
Hi everyone, and thanks for all your replies, looks like I am not the only one to have a negative rheumy who can't think outside the box of what her guidelines state!! I would love to have had a feeling of empowered and inspired reaction to a face to face discussion like Sheffield Jane had, but it was a case of deflated instead. I only got as far as reducing to 4mg back in November whilst following what she said. Currently I am reducing from 6mg to 5 and 1/2 mg following the DSNS method, and all is going well so far, but it is early days yet, so we will see how it goes. I also take Lansoprazole and 4000 iu vitamin D. tablet. Thanks for interpreting the bone scan results for me PMRpro. My 2019 one had my spine down as -3.1 without the same comment as on the 2020. My rheumy said her guidelines say I won't be having another one until 5 years is up, and when I said my GP does them every 3 years, she said perhaps I could arrange it with him then. Gets better and better doesn't it? Today I got my next telephone appointment with her for December in the post plus paperwork for another blood test, but so far no letter. My GP knows how I am trying to get to 5 and 1/2 mg, and is quite happy with that, so I think my plan of action will be to wait and see what she says in the letter, and if it differs from what was actually said, I will put in writing to my GP to let him know the correct version, and maybe cancel her appointment a bit nearer the date, and say I don't wish to have another one arranged thank you, and just stay with my GP, and use this site at the same time, as it is far more useful than she is ever likely to be any time soon!!
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