I said I'd update re my telephone appointment with rheumy.
Had to wait over 90 minutes for his call, no apology. It was short and not sweet. He had got my correspondence asking for DSNS, reducing from 10mg to 9mg over a month. He said he will put me from 10mg to 7.5mg and I said I wasn't happy. He insisted. I asked if I could have a second opinion. He said yes, he would refer me back to my GP who could suggest another. I am very angry! Nobody drops a person with PMR as much as that , I told him, that 10% drop is the max. He said you can go British Airways, Alitalia, Easyjet - they all go differently! Different rheumatologists do different things.
No bedside manner, obviously.
Watch this space. I hope that the GP will not refer me but do as is usually done and take my case himself. And I hope he will agree to my suggested regimen.
Am I behaving sensibly?
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ChinaWuntoo
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It’s so hard to not be listened to. Keep looking for a Rheumatologist with an ear and heart. I’m in the process of getting a second opinion at Mayo Clinic in the hopefully near future. I had to increase my dose from 10mg to 15 mg on my vacation because of the pain I had before I left. My rheumatologist has pushed me to 10mg and felt I had RA which no blood test had ever shown.
The alternative is to try the 7.5mg drop and see if it works. Especially if you tried doing a slowed DSNS - each step twice but use 2.5mg. Almost all the literature recommendations do say the drops from 10mg should be 1mg so he is out of step with the majority. But you questioned him - and he feels threatened.
But I wouldn't fight the DSNS battle with most rheumies - I'd start with getting the smaller steps established. Then I would make sure I had a bit of extra pred in hand and do it anyway.
I can't stand the thought of going back to the original pain. So not happy to try 7.5mg.
Yes, I suspect he didn't like me quoting all the literature / experts in support of my request for slow taper! This is the man who told me that 10mg would preserve my eyesight in the event I have got GCA. So we can accurately assess his sklls on PMR, I think.
Oh I think so! I referenced a paper this morning in the context of one of the current Actemra threads where they looked at a patient who'd been on Actemra for 3 years and still lost her sight after coming off it. Somewhere it mentioned being on 15mg pred not stopping a flare/visual problems.
"You have mentioned before that ESR/CRP being normal is not an indication of no inflammation. Can you please explain that a bit more? My Rheumatologist seemed very pleased with my “normal” levels and really wants me to continue to taper rapidly ..."
Perhaps I should send a letter to the rheumatologist asking if he has read the NICE guidelines which give 'patient wishes' as a key feature of treatment! Perhaps I should ask him if he knows what PMR is?!
I now have to compose a careful letter to my GP asking him to keep me 'in house' at my suggested regimen of reducing 1/2 mg in four weeks.
Thank you all for your supportive comments, much appreciated.
Easier to make a list of good ones, I suspect. Listening to Vanessa Quick this morning and, I think it was Candy?, - people like her and Dr Gasgupta are few and far between. I was rather shocked to hear that there are no fast track GCA clinics in London.
I totally agree, we should all complain about 'bad service' it's the only way things change, just walking away means they get away with their attitudes. We are paying for their services and entitled to excellent care.
I would be stotting in your position. I am managed for my PMR by gp. So much easier. Hope you find a smoother path. Trick is to have enough pred to do it your way if necessary!
Yes - and in the necessary sizes, which should become easier now that I will be below 10mg. I don't really want to look for another rheumy, having done some research in my area of East London [Southend is too far!! ]
Why keep a rheumy if no good. Better to get a good relationship with your GP and manage them. You then take responsibility yourself. That's what I did and do. And with the help of Pro, DL and all our experts on here I'm on my last week of reduction down to 1mg. My Preds arrive at my door every month. GP calls for an update every couple of months. I tell him how it's gone since our last chat. We decide, well I decide on the plan for the next couple of months. Both of us happy 👍🙂 Good luck.
Dreadful man! I’d like to bet you aren’t the only one of his patients on the receiving end of his ignorance & bad manners. You need a dr who is prepared to discuss things with you, ok they may disagree but at least give sound reasoning why. I do agree with pmr pro re dsns, go quietly & slowly yourself, see how you get on. Good luck & chin up.
I was referred to a rheumy by a doctor before PMR was diagnosed - she suspected RA. Then my usual GP diagnosed PMR and started me on 15 mg Pred. Almost immediate pain relief and blood test 1 week later showed inflammation levels had dropped- so diagnosis confirmed. 6 weeks later I saw the rheumy - she was happy my symptoms etc were PMR and as not RA, she did not want to see me again. Meanwhile she wanted me to begin to taper to 10 over a month - I argued the case to be allowed to go more slowly, dropping first to 12.5 for one month, then 10 for a month and thereafter reducing by 1 mg a month at the max. She reported this taper by letter to my GP and handed my care back to her.
So maybe don't bother with any Rheumy - I have read many people on these forums (especially in the UK) who are never referred to a rheumy but work with their GP.
I asked my GP not to re refer me to the Rhuemie. I was discharge after the first consultation back to the GP. I tole her she did as much as the Rhuemie would do, but she still went ahead and referred. Have just received appointment for a portal consult but asked to rebook. I am hard of hearing and phone calls stress me out. I lip read. Have not heard from hospital since.
We live in hope!.........but this treatment of patients probably doesn't surprise you if you and OH have been in medical circles, but those of us that haven't just expect courtesy.......my other sister (Not the one with RA) says why do I expect them to have answers......I don't but some advice might help, or admitting they don't know the answers.....but alas many are too arrogant for that........
Yes I have now, but I have had to suffer at the hands of other ignorant rheumies on the way. I'm lucky I live in Leeds so could transfer. I only need a rheumie because my PMR is long-term complicated and now involves steroid injections, otherwise I wouldn't other with a rheumatologist. If I could turn back time and knew hten what I know now I'd have just stayed on 5 Pred for ever, it was trying to get below that where things started going horribly wrong.
My daughter (the NP) said the same that we expect them to have all the answers, but we don't . We don't think they know everything but we expect them to listen and agree different plans if necessary not be arrogant and act like gods
We also expect them to only speak truth and not things like you can't have PMR /GCA you're too young, or you need to taper off steroids at all costs, or it'll all be goone in 2 years ...
And I suspect he is the boss rheumy in that group of hospitals! A 'professor'. I have built a list of things where I think he was wrong or unhelpful and it's getting longer as I review my notes.
Still spitting. Must be careful of stress or a flare could arrive.
Where is the care and compassion all doctors, whatever their position are supposed to have. Very little been shown lately to many unless you have the covid 19 .
what a bad experience !What does rheumatologist do anyway for P.M.R ?A decent g.p and your own knowledge may probably serve you better.You know how you feel,and prednisolone is the only treatment."Expert patient" for chronic conditions! Good luck!
Gosh my Rheumy lets me do what I want- he occasionally asks me to consider other medications but still happy to support me when I decide to stick with Pred - am now comfortable on 4 mg so do what you think is best it doesn’t matter if it takes a wee bit longer
You know how it is - middle of the night chewing things over! The list of moans about him grows.
I've realised another thing that I need to research today: the ex-rheumy kept me on 10mg for 25 weeks before wanting me to reduce to 7.5mg. That, from my memory, is longer than usual and I suppose it makes a large drop by 25% even more inappropriate.
where they used a tapering approach where they planned to keep patients on 10mg for a year and found it reduced the rate of flares from 3 in 5 to 1 in 5. I quote it a lot.
However - from there, which is where it matters, the steps were 1mg at a time.
Many thanks. I had read her paper some time ago but forgotten some of it. I am pleased to know that my feelings about such a large drop are probably correct. It seems that my ex-rheumy falls between two different views.
Do you know what she advocates now? From her excellent 'performance' at the PMRGCA AGM yesterday I would trust what she says.
As far as I could gather last year by her reply to a current patient who obviously didn't associate the name on the paper with the name on the NHS ID card and brought it to her attention as an option, she is still using that approach or something very similar - I'm sure she plays with it at times.
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I feel so deflated 
Confused & frustrated!
Pmr and diabetes 
PMR
HighBp
