As above and he refuses to take note of the instructions given to me by my rheumatologist who dose not ever mention 2.5 and the lowest she states is 5mg but that is in 3 month time. I don't get to see my rheumatologist until the 18th June so to make up my recommended dose from 14 2.5 mg tabs I will probably run out before I see her .
What should I do if / when I run out.
Hi iveco, just checking PMR DX about 3 mths ago. 40mg pred reduced to 15mg. The gp says drop to 2.5mg now? If that's the case you need to take action. Speak to Rheumy office asap. I don't understand why gp would refer you then decide s/he was in charge of pred. If you can't get through to Rheumy can you get appt with a different GP or at least a call.back. I am sure other suggestions will be made and of course it's always the end of the week when these things happen. Do not try and drop from 15mg to 2.5mg....jyst a triple check....are you sure he didn't say drop BY rather the TO 2.5mg? In either case it's not right at this stage.
Thats not good at all, can you not ring your rheumys PA and get a message to him or email him urgently, alternatively ask to speak to the practice manager at go surgury and explain/complain ...
Find another doctor. Quickly. That is far too big a drop for anyone who has been on pred for more than a few days. You should also be able to make a complaint via the practice manager - do you have a copy of your rheumy's instructions?
You are sure this isn't a mistake/misunderstanding? It is deliberate?
Don't know if it is a mistake or not but when I went down to ask why I did not have enough tablets the woman on reception said she will get someone to come and see me. after about 30 mins one of the doctors did see me and said I did not need to be on 15mg and 2.5mg would be more than enough and refused point blank to issue me any more .
Omg. Its complaint time I am afraid. That is not right at all. I would be recommending the surgery read the guidelines so they can ensure people get treated properly. Let us know what happens.
I have GCA and have been on prednisone for 8 years, and have had the yo-yo effect of high and low doses while trying to get off of this medication. It is dangerous to drop so dramatically. If you have been at 15mg for more than a month, you need to lower your dosage gradually by 2.5mg until you get to 10mg and then by 1mg until you are at zero, at least this is what my Rheumy and Neurologist have told me. Plus, you cannot just stop prednisone cold turkey - you could go into cardiac arrest; it is time to go to another doctor. I'm so sorry this is happening to you.
That is terrible.
Seems like 12.5 would be more like it, not 2.5.
This seems ridiculous and frightening for you. Do let us know how you get on.
Perhaps I don't understand the system, but why is your GP in charge of a prescription ordered for a condition treated by your rheumy? That sounds like trouble. If GP is out and some yahoo is calling the shots, they could really cause some serious problems. Is it possible to get the orders into the hands of your rheumy and quickly?
Hi ,OK I think it is all but just sorted out. Partly my fault and partly their fault. My wife is a paramedic and while I was at work this morning she rang the doctors and told them I need to see a doctor as a matter of urgency about my PMR medication , I was given an appointment this afternoon which I have just been to. The doctor said ( not the one I saw earlier who was a stand in ) that the 2.5 mg was to be taken with two of the 5 mg making 12.5 mg but he admits it was written down as just take one 2.5 once a day and also I was given no 5 mg. He has given me the correct amount of 5 mg to make 12.5 and also more 5 mg to finish off the next 7 days at 15 mg , so I have now got enough to last me to the next reduction to 10 mg. I have also been given a extra appointment to see him next Friday PM to discuss how I am coping with this PMR
That sounds more like - but the stand doesn't exactly stand out do they?
I’m pleased the issue is resolved, but in all honesty, I don’t see how this was in any way your fault. The practice messed up. You, rightly, queried the prescription amount. You had to go to the practice, explain to a receptionist and eventually a doctor confirmed an incorrect dose.
That’s wrong. Ok, for PMR it’s not life threatening, but the doctor confirmed and incorrect amount of your med. For you, that was potentially devastating in terms of symptom control if you’d accepted what you were told.
Then your wife, fortunately familiar with dealing with drs, meds, etc takes it up...
Seriously, there’s no way this was down to you and I would urge you to consider a formal complaint through the practice manager. It’s not on and if people don’t raise concerns, nothing is done. It doesn’t need to be contentious, but they messed up. You’re the patient. They are the so called health care professionals.
Exactly - not everyone has a tame HCP used to dealing with their colleagues. I always feel great sympathy for Joe Public because they haven't a chance in a situation like this,
So pleased - I was getting really worried on your behalf. Admin errors are on the increase as the health services are under so much pressure and we have to be vigilant - with our bleary eyes, fuzzy brains, and fatigue!😀 Thank goodness for your wife.🌺
Frankly PmrPro, it’s outrageous. Most of us, self included, are Joe Public. We shouldn’t have to negotiate such vagaries. Basic standards are falling throughout the NHS. Yesterday there was a report if a major Trust about to be investigated:
‘An independent inquiry has been launched into the running of a failed NHS trust - amid concerns 150 deaths were not properly investigated.
The Trust formed in 2010, ran services for about 750,000 people on .... until 2018.
The inquiry will look into "historic incidents of serious harm" and 17,000 cases related to patient safety.
Health minister Stephen Hammond said families deserved answers.
The trust previously apologised to patients, families and staff.’
17000 cases affecting patient safety beggars belief. To say nothing of the deaths.
As patients, we’re entitled to professional care. We also have a responsibility to highlight, through the appropriate channels, failings. We have a voice and should use it to help others who don’t.
I’ll get me coat😜
Roll your sleeves up while you are at it! It is outrageous - and I know a lot of current NHS staff who feel the same. Did it say which Trust - or is it still under wraps?
My husband was in charge of a diagnostic department - and he actively encouraged patients to file a complaint where appropriate. I think it is fair to say not much went wrong in his departments - apart from an occasion where someone was overwhelmed and used the sort of technique we've heard of posties using to cut the workload. Which of course ended up on his and his staff's shoulders as they worked extra hours to catch up the waiting times it had created for the patients involved but was not their fault.
Liverpool. Edited to clarify:
Liverpool Community Health. LCH no longer exists, with most of its services now run by Mersey Care.
Grief
theguardian.com/society/201...
Haven't had time to read the G much yestereday and today!
I'd love to know how much this has grown since the responsibility was transferred from doctors to admin. When the bottom line was no longer patient safety but money ...
Call your rheumatologist immediately. I am sure they will give you what you need.
Take ONLY the advice of your rheumatologist!
Now down to 2.5mg pred
Eight weeks into PMR taking 15mg Pred
Relapse after two weeks on 15mg Preds
first drop in dose of pred
