Hi
I was diagnosed in October 2023 with PMR and have been reducing from 15mg prednisolone now on 2mg.
Having seen a GP today she said I was reducing far too slowly and needed to now go down to 1mg for a month then stop altogether.
The reason for my visit in the first place was due to me being in pain again and only 1 pack steroids left.
Is there anyone out there that can help please.
Upanddown
"Having seen a GP today she said I was reducing far too slowly and needed to now go down to 1mg for a month then stop altogether."
Wrong GP-lady - the patient is actually reducing FAR too fast! Is she trying to make you really ill with adrenal insufficiency? To get from 15 to 2 in just over a year is way ahead of the curve - half of patients take up to 18 months to get to 5mg pred. The other half take longer.
We can tell you what you need and why you are in pain again but you are going to have to find a GP who understands PMR and the use of pred to manage it. The pred cures nothing - it is a management strategy and you have to identify the right dose to manage your symptoms until the underlying autoimmune disorder has burned out and gone into remission - for about a third of patients that might be up to 2 years or so but for the rest of us can be much longer.
You are never reducing relentlessly to zero - the tapering process is also called titration of the dose and is to identify the lowest effective dose that manages the inflammation as well as the starting dose did. At what dose were you last really well? When did the pain start?
Whenever that dose was, you probably need to add 5mg to that dose for up to 1-2 weeks, clear out the accumulated inflammation, and then drop straight back to the dose above where the pain reappeared.
If you only have one pack of pred left - that isn't going to happen until you can find a doctor who knows what they are doing - i.e. not her. What are the chances of that at this time of year? Have you ever had your markers checked in the year on pred - since they were raised at the outset, they may still show you are flaring, they don't always so it is important to know what they were.
PS - don't want to make assumptions - a male or female cleaning supervisor?
Hi
I’m a female of 65. I felt better at around 3mg but the doctor will not give me enough to reduce slower.
I’d like to thank you for your reply and help.
Wishing you a wonderful Christmas
Hope your Christmas went well.
Having now got my prescription of 28 1mg prednisolone I’m going to have to ask if I can see another GP. Please wish me luck
LOTS of it - I do hope you are successful.
Having just phoned my surgery to ask if there is a Dr who knows more or specialises in PMR. Got told all have general knowledge of PMR! Looks like I have a battle on my hands along with this debilitating disease.
I suppose they DO all have "general knowledge" but some may be more empathetic than others. So that is probably what you will have to do - try until you find one who has a better general knowlege than the one you have seen.
Where are you in the UK? In the south we would duggest a single appointment with Rod Hughes in Chertsey to get specialist instructions to a clueless doctor. Another who is very "slow taper" is Joel David in Oxford. There will be others but not all rheumies are good at PMR either and a lot of good ones don't do private work and their NHS waits are very long.
Thank you. I live in the Medway Towns in Kent
Would Chertsey be an option? The rheumies in Kent used to be awful - no idea where they learned their trade! There may be someone good in Essex if you ask - there have been changes in Southend that seem to have been positive.
I think we would all say you have tapered very fast to get to 2mg in just over a year. I have been on prednisolone for nearly 8 years and I am at 3.5mg. I taper when I am ready and my GP goes along with it. At your level now you need to slow down and taper by 0.5mg a month or longer. It is PMR who is in charge here.
You will get some more answers from those who are more knowledgeable but I think you should see a different doctor who understands PMR better.
Good luck with that.
As others have said too fast a taper, and a different doctor required…unfortunately other than that, not a lot we can do.. except sympathise -but that’s not much help when you need more Pred.. sorry 🙈
The nurse at my surgery advised that I had the right to ask for a different GP if I was unhappy.
I feel that there must be a way around this. Can you exploit the seasonal pressures on the NHS and maybe call 111 and ask for an emergency prescription? We shouldn’t have to do this but….People on the forum have also said their pharmacist has supplied emergency prescriptions. It's a short term measure but would take you through this stressful period and into the New Year when you can find a better GP, or even go private. PS I was diagnosed in Nov 23 and have tapered from 20 to 4 ½ mg, but am now taking it really slowly.
Where are you in the Uk? There might be someone on this forum who lives nearby who could spare some pred.
I live in Medway
I've got loads of prednisone spare but in Essex.
I too have spare prednisolone (near Lymington/Christchurch)
Yorkshire any help.? I am very fortunate in that my GP sends steroids with my other drugs even when I don't ask for them .Good luck .
Please show this to your doctor.The accepted tapering regime states that reductions should be no more than 10%. Reducing from 2mg to 1mg is 50%. The slow tapers do not reduce from old to new overnight. They introduce the new dose slowly, days at a time until the full seven days is at the new dose.
Any patient who has been on long term corticosteroids and become HPA axis suppressed must reduce their Glucocorticoid slowly. Even if the patient is in full PMR remission, consideration must be given to secondary adrenal insufficiency from HPA axis suppression.
Author: FC. BPharm 1979. MRPharmS
Wow. listen to your body and find another doc. None of us wants to be on steroids. But your doc not listening to you is not right. I got off after two years. My advice , learned from this website, would be to increase the steroids bit by bit until the pain is gone and reduce very slowly after you have the pain under control.
all I can say is that I reduced v v slowly, particularly the last 1mg. I stayed on one half for quite a few weeks. I had a short relapse & at my GP’s advice went up to 5mg briefly then back down again to one half qiuite quickly, then stopped altogether & have been pain free for 18 months now. Good luck
no one wants to stay on steroids long term, but it seems to me it’s the only solution. Your GP doesn’t seem to understand that
As a follow up to another reply- maybe show your GP this re management of PMR - and although we don’t necessary agree with this particular comment -
Typically, treatment is required for between 1–2 years
The rest is reasonable- and might give her a better idea of how to treat you.
The problem is many GPs often only prescribe Pred for short periods for acute episodes/illnesses.. and as PMR a chronic illness it needs a much longer course of treatment, so they get in a bit of panic about that.
Question for the experts
Doctors orders to reduce prednisolone. 
Alendronic Acid
Reducing Prednisolone
Doctors today
