Hello everyone.
I was diagnosed with PMR around June 2024 although I'm sure that I had it for a while before then. was originally prescribed a daily dose of 15 mg prednisolone which was to reduce over time. I seem 'stuck' at a daily dose of 10 mg. Every time I've gone below this my symptoms return. I've tried about seven times since August 2024. I'm seeing a rheumatology consultant on Friday but just wondered how widespread my problem is.
Hi and welcome.
You don't tell us how you are trying to reduce from 10mg. What size steps are you taking and how often? And after the symptoms flare - what do you do? Do you make sure the symptoms are properly under control and then try a smaller step down? To have got to 10mg and then failed to get further 7 times in barely 6 months suggests to me you are going at it like the proverbial bull in a china shop.
You are never tapering relentlessly to zero - you are tapering SLOWLY to identify the lowest effective dose. When your body rebels more than a couple of times at a similar dose it is telling you to stop hitting it too hard and give it some TLC and time.
Thanks for the replies everyone, I feel a bit better now. I’m following the first doctor’s instructions and time scale to reduce my dosage. I had reduced the dosage to 9 mg and for a short time 8 mg. on two occasions before going back to 10 mg. It is quite amazing what a difference those 2 mg makes.
I spoke to a second doctor on Monday and got ‘told off’ for being on such a high dose for so long, hence my trip to the consultant later this week.
Wonder what he says to patients with GCA on over 30mg for months? You need what you need ...
Too polite to says what I really think about both doctors - second one in particular - so balderdash will have to suffice 😳
Hi Dorset Lady
I came across the first doctor’s timetable on a NHS site which she just copied and pasted onto a text to me. I assume that the second doctor looked at the same site given his comment along the lines of ‘you are not following the script’! I feel that I am being treated by AI.
I read somewhere that many GPs do not see this condition very often and that may explain their attitude. The second doctor was going to refer me to a consultant with the usual warning that ‘this could take a few months’. Fortunately I can afford to go privately and am now see someone on Friday.
Now back up to 10 mg and feeling better.
Good, please keep us updated…
Go on DL,spoil yourself.,xx🤣🤣🤣💐
Hello InTheMoors and welcome 😊
Sorry your GPs seem to be treating you like a cipher and not an individual. Not good enough !
A lot of us get stuck at particular doses (12mg and 7mg stand out for me). As others have said you are never reducing relentlessly to zero, you are looking to find the lowest effective dose for you at any given point.
Good luck with the consultant 😊x
Hi and welcome,
Not as unusual to be stuck at one dose than you may think… but you do have learn to accommodate your PMR - it’s not matter of “take the tablets and carry on as normal” that many doctors seem to imply. You have a serious systemic disease that needs care and attention and taken notice of 😊.. not necessarily mollycoddled, but certainly a subtle change in lifestyle.
Have a look at this intro post- it a bit long but plenty of advice and certainly read up on pacing - which is a link - and hang on to it for future reference.
healthunlocked.com/pmrgcauk...
Bit more detail about tapering in general -
healthunlocked.com/pmrgcauk...
Thanks for the links DL.
I’m so glad that I became a member here. I’ve had more sympathy and explanations than I have had from the medical profession about PMR.
Thanks again everyone.
Hi and welcome. DL will probably be along later with a welcome and general information. She is away in the Southern Hemisphere at the moment so mot sure when she will pick this up. PMRpro has highlighted some areas and if/when you have time, a perusal around FAQ's with regard to flares and tapering would be useful. Don't be afraid or worried about asking anything, no one here regards any questions as daft or stupid.
Possibly PMRpro will confirm this, but I seem to remember that a group of informed rheumatologists in the Bristol area recommended keeping PMR patients on 10mg for up to a year.
I, for one, got stuck at around the 10mg mark for a good six months, and I know that others have also experienced issues at this level of treatment.
I suggest you probably need to slow down a bit, and just be patient. You won’t beat PMR by tapering down too quickly - it will get its own back!
Good luck.
The author of that paper is Prof Vanessa Quick, now Prof of Rheumatology at Luton and Dunstable and a Trustee of the charity. She still uses that approach - because it works.
It used to be available to read free to air but has now disappeared behind a paywall for some reason.
Thank you for that update. I can remember reading the article at the time I got stuck at 10mg. Seems not much changes with PMR!!!
I would advise making your Pred reduction a much slower process. Use a DSNS taper plan over at least 4 weeks and then stay on the new dose for another 2-3 weeks to be sure that your body can cope with the lower dose. And the total reduction should never be greater than 10% of the higher dose.
It took me nearly 3 years to get to zero from 15mg and I believe that I was one of the lucky ones!
I was diagnosed July 2024 and am presently at 12.5mg - I have tried 11mg but it’s not enough. Fortunately my Doctor has allowed me to follow much of the excellent advice from this forum so I am progressing but slowly. Best of luck
Did you reduce from 15mg to 10mg?Did you follow a slow taper where you introduce the new dose on ever increasing days of the week. ? These schedules take around 6 weeks to complete.
My feeling is, if you went from 15mg in June and were at 10mg in August, that is too fast. It is so important in the early days to get the inflammation which is produced daily (simple explanation) under control before reducing. The more times you flare, the more Pred you are likely to need to dampen it down again. Despite what the Docs may tell you, PMR rarely goes within 2 years, but if you play the game in the early days you might be one of the fortunate ones; and being male is an advantage !
There is plenty of good information on this site. Being well informed will stand you in good stead.
I started on 15 mg in June 24, then down to 12.5 mg and finally got down to 10 mg on 1st August 2024 as the doctor's 'timetable' suggested. From then it's been a struggle.
The doctors seem to think that I will reduce the dosage on a straight line basis over a period of eighteen months to two years.
The second doctor's letter to the consultant suggests that the steroids need replacing by methotrexate.
Yep, that's what I suspected. You're in a difficult position to be honest which is why i suggested you read as much as you can before you see the Rheumy. You can then ask questions. Personally I think it's a bit soon to add MTX unless inflammatory arthritis is suspected. So many Drs have a real hang up about Pred and many don't know much about PMR. Even my Consultant admitted that he didn't know much about it because he trained in India, where it is rare, so he was still learning!!
Have you seen this?
rheumnow.com/news/say-goodb...
Thanks E, I've not seen this one but am aware of the latest evidence. Now on wk3 of MTX with Pred happily reducing at 5mg now. Have to be honest, the OA in my scaphoid and neck seems better! No side effects so far. Perhaps I shouldn't have resisted for 7 years ?!?! F
It is a conundrum, you have to try the stuff to know if you will benefit but it sounds scary and can be horrible. I think the agreement has to be a low threshold for stopping it - it is easy enough unlike pred.
I was put onto MTX, started with tabs then was put on 20mg jabs. For 3 years I jabbed myself and never felt it made any difference whatsoever to my PMR. It did make my hair very dry and brittle though! Have stopped it now.
The second doctor needs to keep up with the times - there is increasing evidence that MTX is not the wonder drug in PMR that some have claimed with a new study in the USA published just recently.
rheumnow.com/news/say-goodb...
Do offer them some bedtime reading!!!!
Hi and welcome. Gosh that does seem to be a fast reduction. I'm going slowly and following the advice and support I have found on here (diagnosed in May 24). I was on 60mgs at one point for eye issues though and reduced quickly down to a more PMR type dosage when the eye settled. All going reasonably well with this slow approach, it can be so dispiriting to go up and down. Hope the rheumy has a more sensible approach. Take care and good luck.
Having pondered your predicament for a couple of days, can i suggest , if the Rheumy agrees with the GP and suggests MTX, you can ask what he/she is seeking to achieve. I would definitely introduce the latest research as highlighted by PMRpro regarding MTX not being as helpful as originally thought. In my experience you are likely to meet resistance because Consultants rarely like to be questioned. However you do have an absolute right to ask questions and challenge any answers. Having had PMR for over 7 years, I've learned to be my own advocate. Plus I'm/ was a Pharmacist which makes it easier for me however, sometimes it's a disadvantage because they know they can't bamboozle me and some got quite aggressive when I refused Alendronic acid and MTX in the early days. Good luck.
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