This is exactly the experience I had with my new GP - and so I sent a letter to the Practice Manager to complain. It has ruffled some feathers... they are investigating further.
Ok, you could try quoting Prof Dasgupta's and other experts' recommendations re. tapering steroids which broadly state that any 'plan' should be flexible and tailored to a PMR patient's individual context and circumstances. And, maybe a letter to the Care Quality Commission reporting your experience too? Why should you have to 'find another GP', especially if your existing one has treated you so badly?
Keep us posted.. and keep your chin up in the meantime
I've said here before that it's a good idea to put these issues in writing to the PM (Practice Manager), paying careful attention to the detail and facts (e.g. what was said by the GP, their attitude etc). Make sure they acknowledge receipt of your letter (recorded delivery / delivered in person if necessary), and keep a copy yourself.
This way things are on the record formally, and they have to investigate and respond within a reasonable time.
O Ronzy your gp behaved very badly. You are not waiting for such a treat. My gp wanted me of 7,5 Mg Pred within 8 weeks with no other reason than Pred is dangerous stuf. I did not feel like putting up a fight while the pmr and getting better asks for my energy, so
Sorry here the other half so I asked for a second opinion, this time to a rheumy. Her answer was a.o. You are so wright wanting to taper down slowly ans she offered to take over. So I hope youll find yourself
Better treatment, you deserve it😉
Hi ronzy,
I think many of us have similar stories. Its disgraceful how some Doctors treat us
The time before last I went to see my GP I told him I was down to 6mg but suffering from extreme fatigue. He just shrugged and said. Ok you are now at the level where your adrenal glans should play a part. "reduce the pred at 1mg a month from now on. I said to him "because my difficulty in reducing this far I would rather go at 0.5mg" So he said OK see you in a year. That was my time up with his consultation.
So can only repeat what Mark has said, but he has a more precise way of writing
Sounds like your GP is at least happy to let you self-manage the preds, even if he isn't willing to check-out the Fatigue issue (e.g. Synacthen / ACTH test and regular FBC blood tests etc. just in case)! That said, DF (Deathly Fatigue) seems to go with the territory of PMR and Pred reductions, even with the gentlest of 'plans'.
I think the issue for some of Us Lot here is around GPs and / or Rheumies suggesting that they will withdraw / stop prescribing Preds for whatever reason, when their patients clearly still have active disease symptoms and are managing their reductions sensibly and safely, with expert advice from this forum. That's quite worrying. Mmmm....
Isn't it frustrating. A friend of mine just can't get lower than 5. Sometimes she will suffer all day on a reduction. Then her husband says "For goodness sake em. Take the bloody tablets you're 75 now."
Shocking. Agree with everyone, of course you must change your doctor, there is no respect for you and you have no confidence in this person. However, please make a formal complaint. It has to be recorded at the Practice meeting
with the action taken recorded. This person may be subject to many
complaints which the Practice has a duty to investigate
You also remind them that some patients never come off prednisone, the side effects at very low anyway
Even though I'm (supposedly!) good with 'the pen', even I find putting it all in writing a challenging process. With PMR, it's bad enough to get poor patient care from a health professional: even worse when you get brick-walled and / or met with equally poor and vague / unreliable responses following a written complaint.
But as I always say, The Devil is in The Detail etc... Keep accurate records!
Look at how he went about dealing with the same sort of poor care. He complained to the practice manager etc - he replied to you earlier on the page. It has to be done properly. First make a complaint and if that doesn't get you anywhere - find another doctor who does care about their patients.
Put things in writing - Facts and Detail are Key, and you have a record
Plan the letter in note form first - jot down what happened / didn't happen / the GP's attitude, comments / how you felt as a result, etc.
Write in Plain English, keep it simple and direct (try not to 'waffle' / go off the point!)
Quote respected reference sources and research (e.g. Dasgupta / this forum etc) to back-up your message(s) if appropriate
ASK for what YOU want / need in terms of action / results, and why
Don't let strong emotions tempt you to unfairly accuse or insult the GP / PM / Rheumy or whoever, (even if they deserve it!)
Ask for confirmation of receipt of your letter, and a reasonable expectation as to when and how to expect a reply (e.g. 7 days / by telephone etc)
Hand-deliver it if possible - it's quicker than snail mail.
Then... try to let-go and wait. If no response / an unsatisfactory one, write again with a copy of the first letter, and giving a further time for a satisfactory response or you will consider lodging a formal complaint with the NHS and / or the GP practice's regulatory body.
If you say "I'm on steroids" to some people you do get some funny looks sometimes, but you would expect doctors to know the difference- or maybe not .......
Either than or they don't understand steroids and/or the illnesses!
Lesson one in medical school, to be repeated liberally, no one, not even a physician, can know everything, and there may be something new to be learned from every patient you treat.
Well, I doubt it, if indeed they spend 7 years studying Medicine to qualify as GPs / Family Doctors etc! I suspect it's more a case of some medics simply not understanding and / or accommodating their patients' circumstances and needs adequately - possibly due to caseload / time pressures?
That said, and from what I've read here about numerous PMR patients' experiences and conversations with their GPs about steroids / tapering etc, anything is possible..!
Sorry HeronNS, my reply didn't follow close to question! I meant I doubt that doctors are unaware of the difference between corticosteroids and anabolic steroids... etc
I am not sure that GP’s know enough about this disease or treatment, so when confronted by a patient who has different ideas/needs of reduction they will invariably throw their toys out of the pram, rather than listen. It seems to me “my way or no way”
On one follow up appointment my GP was very concerned that I take it extremely slow in the reduction of Pred as she had read something that stated very slow reduction is the best way. Then on my last but one visit for something unrelated she was very concerned that I was still taking them.
But stuck to my ground and told her I have managed for 20 months to increase/decrease as I required with no help from medical professionals so I think I can manage the last few on my own, maybe that is why she so readily got me an appointment with the rheumatologist. (Who wanted to go down the Methotrexate route)
The whole thing with Pred is do not just stop take time to reduce.
How rude and ignorant. I sometimes wonder if doctors actually realise that when you make an appointment to see them it is because you are feeling ill. To be treated in that way is cruel and unfeeling. There should be a specific exam in people skills the GP's have to pass before they can practice!! Well done you for standing your ground. It's exhausting isn't it?
I've sometimes thought that. They tend to begin "How are you?" - to which I unthinkingly respond "Fine". Then - 'Hang on a minute . . .' Once, when I was trying to describe the severe limitations of my available energy, the GP responded, "Yes, I often feel like that . .. .. " I could see how little he understood. Luckily they're not all that bad.
Another thing is how hard it is to get an appointment. When you're feeling really ill, all these obstacles are the last thing you need.
My heartfelt sympathy Ronzy for having to deal with this bad mannered moron - I do hope you find at least a competent doctor who knows that you know your body better than anybody else. Keep going mate and good luck xxx
Ronzy,l hope you find a new doctor who takes more notice of your needs,we are the only ones who know our own bodies,it is very difficult to explain to other people just how bad PMR can make you feel and how difficult it is to even dress yourself when your arms are so painful and legs so stiff you can hardly bend them. I am lucky to have a good GP,he suggested l lower the preds. I mlg every two months,and to see him each time to find out how l was on the lower dose.l have managed to reduce down to three mlg's and unfortunately the PMR is returning,l wonder if anyone has actually ever managed to come off the prednisolone completely. Good luck Ronzy finding a better doctor.
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Hello out there, I'm back!!
Call from doctors 2am about GCA and ESR levels
Should I insist on cortisol test or am I a steroid 'junky '?
doctors should listen to their patients
