In reply to whatawonderfullife PMRpro said: On the basis of this article - I would be sticking with my GP .
I have been wondering....can people help me with the 'professional etiquette' that exists between consultants and GP's?
For example, if my rheumatologist does not agree with my request to start a DSNS regimen (he already has stated that he expects to be able to reduce my pred in early September but hasn't told me his usual plan) can I ask to be discharged to my GP? I could then make the request to my GP and, if he doesn't agree, I could ask for another rheumatologist. Is this how it can work, please?
Perhaps I should ask the rheumy for a second opinion?
I would be prepared to go it alone, but I need the GP to prescribe the pred in the right amount and the right size pills (you cannot cut 5 mg into 5 pieces methinks).
I don't want to upset anyone but I do want to take charge of my gradual return to normality.
Of course, I may be worrying unnecessarily.
I will be back to let you know how it goes on 5th September.
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ChinaWuntoo
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Hello. I'm in the mind to change Rhumi at the moment. My experience is that since having a Rhumi the GP has passed all responsibility to them but in the present climate, changing,getting appointments or telephone consultation is nigh on impossible.
Therefore, you always have the right to change Rhumi, whether that will happen any time soon at the moment is unlikely.
I am in the same situation,the consultant decides to change my medication or amount while attending A&E for example,I ask the Rheumatologist if this is correct in their view who then reaches a different decision or sometimes not,but I then speak to my G.P. who asks the question "who changed this ? and when,?"
It's a nightmare but I received an answer last week from my G.P. who told me it was best to follow the rheumy.
I don’t have much faith in either my Rheumy or my GP.
My Rheumy was totally unsympathetic when I saw her and wanted me to do a quick taper. So I cancelled my next two appointments and was therefore discharged from her care. My prescription is done by my GP who always puts ‘as prescribed by rheumatologist’ so I just do my own thing and follow a slow taper. Every now and then I make a GP appt and ask for whatever I think would be a good idea. Blood tests. BP measurement. I never get summoned to see the GP. Nobody is bothered which actually suits me very well., as I can follow the advice on this forum. Probably not the right etiquette but hey!
Most prescriptions are written by the GP and if you have one who appears to be willing to listen and work with you rather than against you it is worth cultivating a relationship - difficult though it is likely to be at present. I imagine that in the current situation you are not likely to have too many run-ups against a difficult rheumy - but you may well see a different person every time you go to clinic and find they all have differing ideas. A good GP will provide a continuity you may not get with the specialist.
If you decide you want to use the DSNS or DL's taper then actually you are only ever going to be a bit behind compared to dropping overnight from old to new dose. Your GP writes the scripts - and what they don't know they won't weep over. Where it may become an issue is if either try to make you reduce in 5mg drops or too often which even with DSNS is going to be hard for most people or if they try to force you to reduce even though you are not ready.
And then you have a choice: comply and turn up and show the result or try to bring them round to your way of thinking.
My 'problem' is that, yes the GP writes the prescription. If I am to drop from 10 to 9 on a DSNS regimen, I will need a box of 5mg and 5 boxes of 1mg for two months - I don't know, yet, whether my GP will agree if the rheumatologist says I should drop immediately to 9mg daily which would be a box of 5 and four boxes of 1mg.
Given that 2.5 are more expensive (I think), it would seem simpler to take a 5mg and 4 at 1mg. this actually gives greater flexibility with a few spares at a later date.
I told my GP I need 5, 21/2 and 1 mg. I have on repeat prescription. She never queries it. I don't always order all of them. I showed her the DSNS method and she hardly looked at it just told me 'it's up to you'
Hi China, I am finding the whole situation, at the moment, totally bizarre although it does seem to be working in my favour. Since diagnosis in June I have not even seen my doctor let alone a rheumy. Two telephone calls and three blood tests ( with nurse). I am following a modified DL taper to get to 16/15 mg by end of November. I needed another prescription last week, had to request it via email. Sent a full copy of the plan and said that if he was happy I would need x boxes of 5mg and x boxes of 1mg. Prescription was authorised that day so guess doc is happy. As I said, in my favour (hopefully) at the moment but I do find it odd!!! Without the expertise and help from the lovely and knowledgeable people here I would be finding life even more strange.
I feel much like you,i want to be in control of whats going to happen with my treatment. I think you have to play it by ear and if its not going to plan jump in then ! BTW pred comes in 1mgs , i once had to take 40 in one go , till i got my new 5mgs the next day !! Good luck .
When I was diagnosed with PMR almost 2 years ago, I stayed with my G.P. as he already new much about my health etc. I have not regretted it. He mainly leaves me alone in tapering as he says I know my body best, but is there for onsultation
When first diagnosed, my GP recommended seeing a Rheumie but I decided not to. When the GP suggested reducing pred at 2 years, I emailed him the 2017 Mayo report re length of time PMR lasts, plus the reducing timeline from this and another PMR site. He then changed his opinion on reducing pred and left it up to me, calling me a perfect patient.
I read the title of this thread, and in view of my recent experience with the grumpy rheumatologist, I thought it was going to be about how we could teach them some manners.
Different trusts seem to approach this differently. My doctor's surgery has a part time GP who is a hospital rheumatologist the rest of the time. Anyway, after complaining to the nice lady GP about the grumpy rheumatologist, for now I am in her care, and she will take advice and clarification from rheumatology as and when needed. Mind you, I was so worked up about his rudeness that I was threatening to come off the pred cold turkey and hang the consequences ( I wouldn't actually, but it was a measure of how much he had upset me), so I think she was a bit concerned about what I might do.
I've been ordering my supplies online and just request what I need, since February. So far it has not been questioned and my requests have been signed off regardless. That might change if I am still on pred in 2 years time when the prescription comes up for review, I guess. But certainly, the lady GP seems supportive, so I don't anticipate getting any grief from her.
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