I am now about 16 months into the PMR, coming off of a flare (reducing 7 mg to 6 mg) and I am following the valuable advice of this forum! I have noticed, since the flare, that my days of exhaustion are unpredictable. Eating right, resting, activity level, stress...one day I can barely get up mid-day, the next day is ok.
Is this typical "flare consequences"? Thanks for any input.
I can't give you any advice at this stage, but I am looking for some from you about flares. I am new, just gone from 16mg to 15mg, but don't know yet how good I can expect to feel. Can you tell me what happens when you have a flare, approximately how long it lasts, do you just wait till it settles, or do you go back up a little ? I don't feel good, and am not sure if it is a flare, How good is good and how bad is a flare ?
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.
Hi kathy, like you I have been trying to reduce my pred intake and last week suffered a small flare. Thanks to the advice I have recieved from others on this forum I am going to increase my dose as from today and hopefully get things back under control. Good luck in your quest.
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?
Good idea!...hit the flare hard and fast! Wish I had done that.
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
Kathy I am sorry you are so exhausted. This can be due to the fact that you are now at the level that your adrenal glands have to start doing some work for themselves rather than relying on the steroids to do it for them. I can get unbelievable fatigue some days, like hitting a brick wall. I suppose I have good days and bad days.
Kathy, not really "typical flare consequences", just par for the course with PMR, unfortunately.
Almost all flares result from reducing by too much and too soon. The difficulty lies in finding how far each one of us can reduce before reaching our own personal maintenance dose - the lowest dose that still controls the inflammation. This is why we keep saying how important it is to taper to each dose very slowly, so that we can quickly see by any returning symptoms at which dose we have just overstepped the mark and quickly return to the earlier dose and mark time there for a little longer. Meanwhile, it is vital to pace yourself each day, never getting to the point where you have overdone it or PMR will come back to bite on the next.
It is especially important to clear the decks and never plan a reduction during a week when you know you have a lot going on. Wait until you know you have a few days where you can give yourself lots of TLC.
I found that I had to turn down any invitations that meant going out two days in succession - one busy day would always be followed by a day of rest. One of my PMR friends called them her 'duvet days'.
Around the 7mg dose, you are in an area where your adrenal glands which have been suppressed by the higher dose steroids will now be trying to kick back in with their pre-Pred production of natural steroid (cortisol), and many of us have found this to be a sticking point, similarly around 5mg. Every reduction becomes a much higher percentage drop than the one before, hence the need to taper so slowly at this stage to allow those adrenals to get back up to speed otherwise there will be a shortfall of cortisol in our bodies to cope with the demands we place on it.
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.
New to group...I have so many questions...maybe Yall would answer here.
i can't figure out what is considered a flare up? The doctors ask do I at least feel 50% better? Well yeah!!! But do I find it painful and frustrateing to function until the Prednisone kicks in afternoon? Yes. But I'm not in that excrutiating pain I was in before Prednisone. So I'm just tapering to get off this stuff and living with the less functionality.
So I can't figure out what is considered a flare up?
How much should I put up with?
Hi Layne. If you read the above it is recommended to take whatever pred is required to give you a decent standard of living. PMR will not just go away so trying to live with less functionality is not going to work, you will just suffer even more each time you have a flare. The harsh reality is that if you have PMR only time will heal it (if at all) and no mind over matter thing is going to beat it, sorry. As regards preds not kicking in until the afternoon, those of us that tend to take them in the morning all suffer the same fate. Good luck anyway whatever you decide to do.
Thank you. I reread, I missed the bottom of MrsO paragraph that describes... So sounds like most of us are 50-70% which feels better than the 100% in pain.
Well I hope for all of us to heal soon and feel better and better!!! Blessing to all!
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.
Welcome Layne, I have had a couple of flare ups one being an overenthusiastic doctor trying to get me to reduce too fast. The pain before pred returns, I feel exhausted and also feel as if I am suffering from flu, in fact I feel like death!
You say that the pred does not kick in until the afternoon have you tried taking it earlier? Which type are you taking? Is it a coated version?
As tavidu says PMR is for the long term it usually lasts at least two years and often much much longer. The aim is to get down to a maintenance dose of pred where you are still comfortable. It then can burn itself out when you can stop taking pred, but the PMR is always hanging about in the body so can resurrect itself in the future. It does seem that getting off pred too quickly can exacerbate this, but that is not a scientific statement on my part and may be wrong.
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.