First post here! I'm an otherwise fit 72 year man, I started by PMR journey some 8 weeks ago with diagnosis confirmed by clinical examination and blood test 5 weeks ago.
I commenced treatment at 15mg daily, the initial response was reasonable but no more progress for 4 weeks. Further bloods showed big reduction in ESR but still with elevated CRP.
My GP has somewhat reluctantly increased my dosage to 20mg daily with early signs of improvement but with nightime/early morning symptoms still present but nowhere near as bad.
I know that tapering can only begin when all symptoms are controlled. Before the PMR struck I was a fairly muscular 93 kilos (permission to laugh granted). I feel that the initial dosage was too conservative considering my build and weight, my GP is giving all the signs that she will refer me to a hospital consultant rather than increase my dose to 25mg daily.
My main question is that are GP's limited to a maximum of 20mg daily? I know that NICE give the approved range as 12.5 to 20mg daily but they also refer to the EULAR/ACR in prescribing who indicate that the range is 12.5/25mg daily:
"The EULAR/ACR guideline recommends using the minimum effective corticosteroid dose within a range of 12.5 mg–25 mg prednisone equivalent daily as the initial treatment of PMR"
This is stated in the NICE documentation on PMR.
I've no wish to antagonise my GP but I also have no wish to go on an NHS waiting list at this level of steroid which will not only prolong tapering but place me at risk of adverse steroid side effects.
Sorry for the long first post.
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Mack100
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It’s not so much that the GP is allowed or not to prescribe a higher dose but they are not ‘Specialists’ & therefore don’t want to extend the ‘normal or recommended’ dose.
If you are not responding to 20mg then perhaps a differential diagnosis may need to be considered.
There has been discussion previously about weight, size, height being taken into consideration when prescribing Pred. PMRpro maybe able to offer you more detail on this.
In children Prednisolone is prescribed according to the child’s weight.
Normal start doses for PMR are anything between 15 mgs to 25 mgs. It is reassuring to know that you have had a positive response to 20 mgs. If your diagnosis is correct I agree that as a big chap this might mean that you do even better on 25 mgs. There is also an issue around the rate of absorption in different people.
There are no tests that will confirm PMR now that the inflammation is partially controlled but a Rheumatologist may want to run tests to rule out other conditions. There is nothing to stop your GP from prescribing 25 mgs for you. Doctors are all wary of Pred side effects. Good luck, let us know how you get on.
No, I don't think they are restricted in any way but we have all experienced doctors who are terrified at the thought of using corticosteroids at all and who will do all they can to keep the starting dose as low as possible. Which is a tad pointless if it isn't enough for you!
A study in Italy from a top PMR group found that 75% of patients would achieve an acceptable result in a month with 12.5mg. They noted that small slim women got a better result than taller and larger men.
and they comment that "The main factor driving response to prednisone in PMR was weight, a finding that could help in the clinical care of PMR patients ..." Using their calculation, they would have started you at 20mg.
Are you doing YOUR bit though? Being on pred isn't the only aspect of management - you need to rest/avoid activities that make the pain worse, the actual disease process is still active in the background, leaving your muscles being attacked by the autoimmune disorder and intolerant of acute exercise.
The morning pain is normal in PMR - the body sheds the inflammatory substances at 4-4.30am and that starts up a new dollop of inflammation. The sooner after that you are able to take the pred, the less has been created and the less the pred must do. The ideal time to take plain uncoated pred is at 2am - the pred is at its peak and waiting to grab the inflammation as it emerges. The anti-inflammatory effect of pred lasts from 12 to 36 hours depending on the patient - so if you are at the shorter end of the spectrum the pain may well return before the next dose is due. One way to target that is to split the dose, taking maybe 15mg in the morning and the rest later in the day so the effect is spread over towards the morning.
So if it were me and the GP remains intransigent, I would start by taking the pred as early as possible and see if that achieves a better result. If not, I'd try splitting the dose for a few days and see what happens. You can go back if it doesn't help. And I assume you have a choice of doctors in the practice? No-one says you MUST stick with that one.
Well - no such restriction as far as my Practice was concerned. I was started at 20 mg, and because that didn't really get the pain under control, I was upped to 30 mg for three weeks, after just six days.
That worked fine, and I was able to taper down; first to 25 mg, then 20 mg, then to 17.5 mg, then 15 mg - a fortnight at each dose. Subsequently, I slowed down considerably, and am now at 1.5 mg after nearly five years.
Not saying you need to follow this route - just saying it worked for me.
Good luck
Paddy
PS: the points made by PMRpro are very relevant too. I did take the pred at about 3am for a while, and also learned the need to rest every day and take it easy.
Vets prescribe drugs to patients dependent on bodyweight and are often surprised that doctors for humans never seem to take this into account even though there can be a massive difference in bodyweight.
Would the same GP would have prescribed 15mg to a small woman or man half your weight?
I am of larger build too, but my in laws are both about 55kgs
At the AGM and Members' Day of the charity PMRGCAuk in September, a Consultant Rheumatologist from Norwich, Dr Chetan Mukhtyar said that he works out the dose for each patient based on their lean body mass. I don't think he said how many mg / kg, or if he did, I didn't take it in. However, this is a similar way of working to the Vets!!
I take gastro-resistant pred tablets at night, so that the pred is in my system in the early hours. G-R tablets are available only in the UK - maybe another option?
Hello Rugger! I’m experimenting changing my Pred to bedtime. The results at the moment seem encouraging with more flexibility in the morning and, in fact, during the day. I take non coated but rang my surgery to see if I could get some enteric ones in order to get a more targeted dose to around 4am. I was told it didn’t matter when you took your dose and that enteric didn’t make any difference! I only comment as I think we possibly live in the same area - even possibly the same surgery! I’m not going to take any notice of what I was told by this particular GP though and will continue experimenting!
Many thanks as usual! Printed off to add to an arsenal! Next time I see my regular GP I’ll present them although I must admit he’s very helpful. It’s the triage one who was so dismissive!
Thank you, Eileen. The articles confirm my night time intake of prednisone as I have a RA factor and PMR. Still ongoing, but comfortable with 10 mg of prednisone daily to counteract Palindromic Rheumatism flare ups.
I have no swelling and joint pain and move with ease.
I think be patient - it is possible you won't get the leftovers under control even at a higher dose. Some people are pain-free, others never get to that stage. At least a 70% improvement is what they look for, most people probably manage 90%.
As many on here have already pointed out, many factors are involved in finding the right dose for you (us). Bioavailability, weight, timing of dosage, etc all play a part in how we respond to doses of medication.
It took me about 8 months of experimentation to finally discover what works best for me. I started on 20mg, and despite being overweight, this dose worked well overall, however I was still sore/stiff in the mornings. I made the mistake of resuming previous physical activities (including some renovations on our house), and over exerted myself after the “miracle” relief of pred, only to suffer later with sore muscles.
Since then I’ve settled on a split dose (2/3 of my pred before bedtime at 11pm, and 1/3 of my dose around 11:30am with lunch). This resulted in pain free mornings at last. Coated pred tablets are not available in Canada, so I bought empty enteric coated clear capsules online, and stuff my night time dose in them to take at 11pm, as getting up each night at 2am was problematic. I also SLOWLY re-introduced more physical activity and follow a low carb, sugar, salt diet that has resulted in a weight loss of 32 pounds which I’ve kept off since May/18. I’m curious to know if my taper will be impacted if I lose another 15 pounds like my ortho surgeon has suggested prior to my pending knee replacement surgery?? I’ve also stopped my high blood pressure medication as well as it is no longer necessary.
All this to say there is hope moving forward that you will solve the “Pred Puzzle”. If 20mg still does not do the trick, you may need to try 25mg to address the inflammation. We are all different, and dosage, timing, and rate of taper is unique to us. Hope you get relief sooner than later.
PMRpro :I'm interested in your reply about the eventual levels of improvement people get to.
From what I've read, tapering can only begin when symptom free. How does that work when there are still residual symptoms, albeit much less severe than at commencement of treatment?
Can tapering still begin with symptoms still evident?
Excellent forum this, so many informative responses.
I suppose it depends what you read: my advice is to stick at the starting dose until the blood markers (if applicable) have fallen to a low and steady level and symptoms have also stabilised. The best you achieve with that starting dose is your guide and what you are aiming for all the time. You should never feel worse at the end of a reduction step than at the start and then you are aiming for the lowest dose that provides that.
It also depends a bit on what symptoms are still there: I have hip bursitis and that took months to fade but otherwise a lot of the symptoms were so much better it made sense to try a slightly lower dose. And some of the aches and pains aren't necessarily directly due to the PMR.
Similar to you -but I was diagnosed about 18 months ago. Doctor initially prescrbed 25mgs and recommended drop to 20 after 3 or 4 days. On 20mgs the symptons came back - phoned doc and told him I was going to go back to 25mgs and taper slowly from there. OK - he said. That's what I've done and am now down to 9/9.5mgs.
From what I've read on this forum some doctors seem to exert a much greater degree of control than others - or maybe some patients are happier with greater involvement from their docs.
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