Had PMR for 6 years

I just have to say you're climbing a ladder at 72, you are active. Good for you.

Ouch!  Manxboy, that fall certainly won't have helped your reduction process this time around.

The most common reason for flares is reducing the steroids too quickly or before the inflammation is really under control at each step.  Added to this once you get to the doses around 7.5mg, that is equivalent to the amount of natural steroids our bodies make when well.  The problem is that the artifical steroids suppress our natural steroid production (cortisol) and this natural production has to get going around around the 7.5mg dose.  Until this happens, there will be a shortfall of steroids in our bodies to cope, therefore the slower the better at this stage with the reductions.  You could also consider asking your rheumy to arrange a Synacthen test when you are around the lower doses to check whether your own adrenal glands are getting back up to speed with making their natural supply of steroid or whether they are in fact making any steroid at all.  A few people find that this natural production fails to get going again and they then need to remain on a 5mg maintenance dose for life.  There are rarely any side effects, if any, from this low dose so nothing to be concerned about on that score.

But also try getting to a dose where you know you have felt at your best in the past but not to as low a dose where problems arrived, and remain at that dose for considerably longer (until all pain has resolved) and then reduce in smaller steps than previously. 

Good luck with the prostate cancer treatment - my hubby would both sympathise and empathise with you, being in a similar position himself.

Hi -i too have  had PMR for 6 years and i am 71 years old .i hsve been on a roller coaster of up and down on pred  i am on 7 mg  a d have  been for over a year -i still have pain but not as bad so a m sticking here for a  while longer and when rheumy  wants me to reduce' when i se e her next i am going to tell her i want to do the  'go slow n stop' method  as advised hereon this forum -did you try  this one -if not would you post again and ask  if  someone would post the link for you  to tap into -i dont know how to do this -but the fellow sufferers here will help you  best wishes jeanb

At this age, we don't climb ladders.

we leave it to the young and more agile.

Please!!!

barb

I've had PMR for 12 years and been on pred for 7 of them. It sounds as if you have probably reduced too fast - and there are figures that suggest that people who reduce to zero in under 2 years are more likely to have a relapse at some later point. You aren't reducing relentlessly to zero - you are looking for the lowest dose that manages the symptoms for the longer term. You've obviously push at those low doses instead of immediately going back to the dose that just managed the symptoms. Too low and the inflammation builds up again and, bang, eventually there is a flare.

Here's some reading, including a very slow reduction scheme in the replies part of the thread that has let many people get lower than ever before.

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316