Hi everyone, just an update on previous posts. Please excuse the comments but I need to release some anger and frustration.
I have been trying to taper down my Prednisolone much against my better judgement. My doctor, who is following the Rheumatologist's instructions, insists that I come off steroids as soon as possible. I know that when I was on a higher dose I felt ok. However, I am currently on 3.5mg, reducing by 0.5mg each month. I am currently in extreme pain, both knees, hands, shoulders etc. are worsening. My legs are swelling and my feet are loosing some sensation. My balance is very poor. I do have other conditions which maybe responsible for some symptoms, but the shoulders pains are the same that I had when first given steroids.
The frustration comes from the inability to obtain medical advice. I have tried several times to obtain a telephone appointment with a GP without success. This morning at 8.30am I called the surgery, to be told I was number 19 in the queue! After waiting 30 minutes I finally had my call answered to be told that all the appointments had gone! I cannot speak to a Doctor to discuss anything, the only solution offered was to speak to an on-call doctor this afternoon. I have never heard of this individual, who certainly wouldn't know my circumstances.
Writing this has helped lower my blood pressure but I am left wondering what to do about steroids. I was given 25mg at the onset which helped me drastically. Should I try this again?
Once again apologies for my ramblings, but at least I have removed some of my frustration.
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maxgarry
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I do feel for you....it’s not good enough from surgery, but having said that it might be worth speaking to a different doctor this afternoon, ok he doesn’t know you, but he will have access to your notes, and he might be more sensible over meds - and even have a working knowledge of PMR!
You don’t need to go back to 25mg, but it might be worth trying 10mg for 4-5 days to see if that helps.
If it does you know it’s most likely PMR causing pain.....which can then be fed into system - be that GP and/or Rheumy.
If it works, suggest you then drop back down to 5mg, maybe in one go, maybe in two 2.5mg drops a week apart.
Please keep us updated, and sit down and have a cuppa!
Write a letter to indicate the level of pain you are being left in. No matter if the locum doesn’t know you, they should react to a patient in pain on 3.5mg Pred whose PMR symptoms aren’t being controlled. Think of it as a medical exam question. They don’t need to know you to know that an enquiry is required into last effective dose and increase to that or even a bit above is in order. They should also be asking if you’ve had a check on adrenal function.
I would accept the on-call doc offer - it can't be any worse a situation. And very often a new pair of eyes and ears can produce good results.
"My doctor, who is following the Rheumatologist's instructions, insists that I come off steroids as soon as possible"
If your diagnosis is PMR/GCA. it has all the hallmarks of having reduced to too low a dose - probably under the direction of 2 doctors who do not understand the nature of PMR/GCA which is a chronic illness that requires management with pred for a median duration of just under 6 years.
In complying with an unreasonable instruction your GP is treating a text book (at best) not his patient. I would be asking WHY the rheumy is so adamant you must get off pred when your illness is obviously still active - it suggests a disinterest in the patient themselves and ignorance of their illness. And this has been going on too long - a new doctor can only be a positive, it can't be any worse.
And please could you outline your story on your profile - it saves us searching through past posts to provide a sensible answer.
So sorry to hear this: just to encourage you: I had a locum who was well up to speed on PMR unlike my GP who Was reading it off the screen, as you say. Good luck.
Can you change your GP - we did when my PMR went undiagnosed and other stuff and it has changed our lives
Hi, so sorry that you have had this experience. I don’t wish to make adverse comments about GP culture per se, so may I just be subjective. If you are unhappy, firstly telephone the surgery and make your request. If you are unhappy with the response, note the details of your call and request from them details of their formal complaints procedure. They should send it to you though the post or at worst refer you to where to obtain a copy their I.e website. If they refuse, ask for the details of their CLINICAL COMMISSIONING GROUP.
The complaints procedure should illustrate how to proceed, the time frame in which the practice has to respond and the steps through arbitration should they become necessary. It goes right the way through to the NHS ombudsman. Properly used this is a powerful process. It can be lengthy, but having worked in GP practice, a formal complaint, whether justified or not used to give me a heart sink moment - they are time consuming, but perhaps more importantly, once in process are open to scrutiny by higher authority.
Patients are often unaware of this process and no-one wants to undo what is often a long-term relationship. Having worked in primary care for many years, I feel qualified to comment both positively and negatively regarding the service and general practice in particular. My advice is therefore to remember that you are entitled to a service and that service should be to a standard which you expect. If the GP is unable to deliver that service you are entitled to a formal explanation, if that response is not forthcoming or not satisfactory to you, then you are entitled to process it onwards onto the health service ombudsman who will pursue it on your behalf to determine whether your complaint is warranted.
Good luck. Sometimes the behaviour of our primary care service can be distressing, it often isn’t their fault, but the patient is the one that matters not the service and I think that this is ignored.
Please talk to the on-call GP. It seems to me you have nothing to lose. And, I would increase the preds as suggested by DorsetLady. Hope it all works out for you.
Dr A. N. Other is better than Dr No! It could be that your usual doctor is the 'on-call' doctor - that has happened to me. My neighbour was seen by a 'duty' doctor just before lockdown. He was excellent and diagnosed and prescribed treatment for a condition she wasn't aware of.
Some great replies here (esp DorsetLady) so I’m superfluous. It helps to know what the pred is doing for you and of course you need to ‘up’ the dose. But not to 25mg.
I saw 3 GPs and they all said I didn’t have PMR as the bloods were clear. Then got a NHS consultant; utterly useless and he told me I needed to expect these aches and pains ‘at your age’ (67!!)
So I went private and was on 15mg instantly. 8 hours later I was a new person. Now following the tapering programme from the Royal College of Physicians’ website. It’s working - just. But if the symptoms recur I don’t need a Doc to tell me to go back to the last safe dose.
I am now in control, but with recourse to a ‘Rheumy’ whom I trust. Life is good. All the best!
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Arrogant Rheumatologists
Good appt. For a change
slightly anxious and just looking for moral support 
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