PMR, prednisone

Hi flutterbie, the dose of prednisolone that we take should always be just enough to keep however much inflamation there is under control. But because we don't ever know exactly how much inflamation we have still raging around inside us there are times that we reduce and it simply was one step too far and we are then not taking enough prednisolone to cover and keep under control whatever inflamation is currently there, hence a flare. A flare is when the inflamation takes control again because there's not enough prednisolone to keep it under control. 

If that is the case then you will probably know very quickly, within 2 days, sometimes by the first evening that there is pain returning to your joints and large muscles, then over the coming days the pain simply increases as the inflamation takes more and more control. You should know within a week if the symptoms are getting worse or subsiding. The only way to stop this is to increase our dose of prednisolone back up to the last dose that did control it. My rheumatologist suggests upping the preds to 20mgs for 10 days to really get the inflamation back under control, then reduce back to the last dose that controlled the PMR prior to the last reduction that failed.

withdrawel is when we have been on a dose for some time, perhaps 6 weeks and we taper down as normal but because our bodies have got use to and feels nice and comfortable with that dose it then gets the hump because we have not given it what it wants, whether it needs it or not. Again the initial symptoms are as a flare only over the next couple of days they lessen as our bodies do adjust to the new lower dose. I stay on each dose for 6 weeks, that allows each dose yo really do its job and I also follow the dead slow and almost stop method of reduction but only ever reduce by .5. Yes I hadn't flare just prior to Christmas and believe me I don't ever want to have another one. All the best, christina 

Sorry to hear you are feeling badly. I hope I am emerging from the worst flare I have had.  Eileen, Lodger, or Mrs. O can better advise you about what to expect. Over the past year the other flares were not as severe as this one. This time, going from 7 mg to 6 mg was kind of gradual...took 2-1/2 weeks for me to realize how badly I was feeling. Big mistake not to have caught it right away. I have been back up to 10 mg for thpast two weeks...feeling more stable, but still not recovered from the flare. Will stay at 10 until I am stable, then will slowly, slowly taper.  When I tapered from 10 to 9, to 8, to 7, I basically felt the same throughout. If you have gone down a mg and don't feel as well, I think you have gone down too much, or too soon. This forum will help you out. Follow a SLOW tapering plan.

 

Thanks Christina for answering Flutterbie57 so succinctly! I am having major brain fog still from this flare!  I am 2 weeks at 10 mg. Can I go right to 8 mg or 7.5 mg, where I felt good....or do I have to spend weeks at .5 increments on the way down?

Kathy, don't do it, don't drop too quickly as I have just done and undo all that good work that you have successfully completed to get down to 10mg. Slow and sure please. Dave.

Hi Kathy, what happened to me prior to Christmas was I was fine at 10mgs for 6 weeks then 9mgs for 6 weeks, all great. I then attempted to reduce to 8mgs and by the evening of the first taper day I felt niggles in my neck, then in the morning it was still there, just a niggle though. By the second evening I felt niggles in my upper arms, then day by day other niggles appeared, hips, shoulder blades. So, you definitely experience an escalation of PMR symptoms. After 16 days I upped my dose back up to 9mgs and within days I was almost back to normal. However, stupidly for me after 2 weeks I then thought, why not try reducing by .5, so did. Disaster, flare number 2. Again all that I explained previously happened again. So I upped my preds to 10mgs so that the slightly higher dose could really get ahold of the PMR and get it under control. 

I then stayed on 10mgs for 6 weeks then reduced, 9.5 six weeks, 9mgs six weeks, then I started Eileen's dead slow and almost stop reduction from 9to 8.5, then from 8.5 to 8mgs.

however, when I saw my rheumatologist only 3 weeks ago he said that what I should have done when I had the flare was to have increased my preds to 20mgs for 10 days then to have reduced them to the dose I was on prior to my flare which in my case was 9mgs. I will try that next time.

personally, because you didn't up the preds to 20mgs as suggested by my rheumatologist, I would perhaps reduce to 9.5 for 2 weeks, then 9 for 2 weeks then 8.5  for 2 weeks then  reduce to 8 and then start your reduction regime again by staying on each .5 dose for 6 weeks, or start at 8mgs Eileen's dead slow and almost stop method.

i have based my suggestion only on the fact that you didn't up the dose to 20mgs so therefore I would still be just abit cautious. Also by reducing by only .5 it is easier to detect a flare and get on top of it quicker. I am not medically qualified and like you I make mistakes whilst on this PMR journey of recovery. All the best, christina 

Flutterbie, see my reply to Kathy, but just to echo what Christina has said, a "flare" can manifest itself in increasing pain a few days following a reduction in dose which continues to build in ferocity, whereas any increasing pain that occurs immediately following a reduction in dose is usually the result of steroid withdrawal and can slowly improve within the following few days.  This is something you will learn to recognise as you go along and know which is which and whether you will need to just mark time at the new dose or increase back up to the previous dose at which you felt comfortable.  In the case of the latter, it it important to act fairly quickly in order to get on top of any increasing inflammation before it runs away and necessitates an even higher dose.  As for "how good is good and how bad is a flare", is very much a different experience for everyone, but generally if you can continue to maintain around a 70% improvement in your pain levels as at the start of treatment, you are heading in the right direction.  A few lucky people become pain-free down through the doses, but they are very very few and far between.

It would take a lot of confidence to up the prednisone dose to 20 and then drop it down to 8 or so after 10 days!...scary! But, since I missed a chance to try that, I am happy to go with Plan B. Will wait u til my houseguests leave after July 4th, then try the 10 mg, 9 mg, 10 mg, etc. slowly integrating the 9 mg...stay there for two weeks, see how I feel. Hope next time I will clue into a flare sooner and jump the dose up. Thank you...dont know how anyone would suvive without all of you! My rheumatologist is great, has other patients with PMR, but I could not be consulting him this often.

Kathy I agree going up to 20mg does seem quite a leap and then a sudden drop. I should be interested in anyone who has tried it. I am not sure I would like to be a guinea pig though! 

Hi Ptolemy, it was my rheumatologist that suggested it and even I would be nervous attempting it, although he is excellent and I have great trust in him. He suggested it following my response to a flare I had just pre Christmas. I had a flare at 8mgs so upped myself to 10mgs and then reduced by .5 every six weeks and he said that I was over cautious and all that was needed was a high dose of 20mgs for ten days then back to the dose prior to the dose that triggered the flare. Regards christina 

As I said let me know how it goes if you ever dare try it! I suppose taking such a large dose definitely will sort out the inflammation, on the other hand I agree I think I would prefer to be over cautious. 

It's just the same way pred is used for others "acute" things - 5 days at 10mg but you are starting from a higher baseline...

Many doctors suggest adding 5mg to the current dose that failed for a week which is a bit less scary. Going back down you should be wary and not go quite to the dose that failed.

I have gone for the 5mg in the past which I felt was a good move. I am not sure I would dare go up to 20mg from 10mg as was suggested though. 

Good idea!...hit the flare hard and fast! Wish I had done that.