Suspected PMR & Prednisolone dosage query

Good grief, yes! It looks like someone screwed up the Rx. If I were you I’d verify that immediately and bounce myself back up to the last dose that worked while waiting for  the results of yr  query.

Good luck and pls keep us in the loop on the outcome.

I agree with Harrie. Once you’re at 10mg, then a drop 1 mg a day every 3 to 4 weeks would be acceptable. Also, there seems to be more success to drop by .5 mg, once you’re down to about 5mg. Maybe they meant it to read reduce 1mg after each month or something like that. Good luck on this. This forum is a wonderful resource.

YES!! CALL YOUR DOCTOR! I'm no expert, but this DOES sound like an incredibly swift (and possibly dangerous) drop!! Please, pls. call the doc asap! This sounds like a mislabeling or miscommunication. Be safe!!

Good grief!  This sounds like a serious mistake to me.  I think they must have meant drop by 1mg  monthly in the daily dose after 10mg.  That is 9mg daily for 4 weeks then 8mg daily for 4 weeks etc. Even this pace is too fast for many. It’s finding the dose that manages your symptoms until the PMR goes into remission which can take usually at least 2 years and often much longer.  Am sure others will provide more information but you need to clarify with Dr urgently. If it were me I would take 10mg daily until you speak to dr.  ( or more if that’s what you need to be comfortable). 

Hi misdmagwumps

I would think your rheumy means to drop 1mg per month meaning drop from 10mg to 9mg for the whole month then from 9mg to 8mg for the whole month tben 8mg to 7mg and so on for the whole month until you get down to 1mg a month this will take 10 months to reach 1mg of pred.....

Do you think he meant to say drop by 1mg a month after you get to 10mg, not all at once, that may make more sense. 

No doubt there is a misunderstanding. I’m with Ptolemy and would go back to 10 mg immediately. I’m also skeptical of a doc who would put you on a taper schedule like that. Everyone is different, this is not a cookie-cutter disease. 

Best wishes 

Oh good luck with this!! Are you able to be confident enough to listen to your own body and the advice on this forum and not listen to these so-called "experts"?  It may be you have totally misunderstood but a fast drop like that is not recommended!  Some doctors say there is a lot of merit in staying on 10 mg for a year before attempting a further taper.  This can be a LONG disease and patience is required.  I have had PMR for 15 moths and am stuck on 9 mg.  When trying to reduce to 8 and a half recently I flared and ahv eput myself bcak up to 14 mg until the symptoms clear then I will go back to 9 mg and STAY there.  The trick is to find the lowest dose of pred that deals with your symptoms and then tentatively try to reduce but there is no hurry!! Pred is not the evil enemy it's our friend that helps us to have a quality of life.

Blessings and Go Well.

The others have said it all pretty much - so here is the medical evidence to back up what we say:

PMR has a median (average) duration of 5.9 YEARS not months. A typical taper would be arranged to last AT LEAST 2 years. You would start with a month at 15mg each day, then a month at 12.5mg per day and so on for each descending dose - and from a dose of 10mg/day you would always reduce 1mg PER MONTH for 10 months, or (more likely) to the lowest dose that manages the symptoms to stay at until the underlying cause of the PMR has burned out and gone into remission. No reduction should really be more than 10% of the current dose in tapering - so by the time you are at 5mg and often before 1/2mg reductions are all people can manage.

You had been on pred above 10mg long enough for your adrenal function to be compromised - that is why you feel so awful having dropped from 10 to 1 mg so quickly. You should have dropped from 10mg/day to 9mg/day. W

Unless you have misunderstood his poor communication (I will allow a modicum of doubt there) your rheumatologist appear not to have a clue about what he is doing with PMR. Find a better one

Report on the Mayo clinic study on duration of PMR:

https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

Video with comment from another top rheumy when the above paper was presented at the ACR meeting in San Diego:

http://rheumnow.com/video/dr-kathryn-dao-steroid-duration-requirements?utm_content=buffercb736&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

Typical tapers for PMR and GCA, also from the team of a top research expert in the field:

http://www.rcpe.ac.uk/sites/default/files/quick.pdf

Wow - thank you all so much for your speedy responses !

No wonder I was  feeling so dreadful....I have re-read his copy letter to my GP and it says "....and then reduce at a slower rate of 1mg per month". I also  queried if with my GP back in June and she said her interpretation of his wording as one 1mg a month and not one a day ! No one ever explained fully the doseage reducing to 9mg then 8mg per month etc..... So, all a question of semantics and me misunderstandiing I suppose...I am not usually slow on the uptake or need things spelling out for me...perhaps it's an age thing! But having said that, if you have never taken steroids before - how are you supposed to know - although I did think it was odd tbh to go from 10 mg and then wait a whole month to take 1 mg...ha ha... plus the medication instructions say do not stop taking suddenly! Which I suppose is exactly what I did !!!  I stopped 10 mg on 7th September and within 2/3 days I started to feel rubbish - so I took 1mg on the 3rd day, another on the 6th day and have taken another today but will up the dose to at least 5 mg per day from now until I can get clarification and another prescription...... The troube is getting a repeat prescription and for those of you who live in London you'll know how long you have to wait for a GP appointment here!

My pressure headache and fatigue hasn't disappeared but am hoping if I up the dose again it will level out and my energy will come back!

Phew....thank goodness for sites with forums like this and again, Thank you all......my appointment with the Rheumatologist is not until end of October but will contact my GP again on Monday for further clarification and a repeat prescription....

I will let you know how it turns out....best wishes, Maggie

Should that read " one mg. per day per month", perhaps? If so, then very poor communication skills on his/her part.

From what we read on here of the experiences of many patients, the reduction schedule cannot be set in stone. What works for each person should be the rule and those of us fortunate to  have been trusted to work out our own salvation ( under supervision ) have found that there has to be considerable flexibility.

I believe, especially at the lower dosed, a reduction of 10% is about right.

What I find hard to understand is that PMR is a fairly common affliction so why have doctors not enough evidence in front of them to see that one size does not fit all?