How big of an increase in prednisone should I try after a flare up of PMR symptoms?
Should I increase 1 mg/day? How soon can I expect relief of symptoms?
I was diagnosed 1 year ago and have tapered to 3 mg since then with 2 issues of flare ups...and do not want to increase my dose too much or too quickly.
Any advice is appreciated.
What level did you most recently feel well at? Standard advice is to return to that level and stay there for a few weeks to make sure you really are stable at that level before attempting to reduce again. If you have been struggling for a while I believe the suggestion is to increase by 5 mg. PMRpro has just replied to this effect in another recent post.
One thing you don't do is try creeping up mg by mg, unless your last good level was only a mg higher. I recently felt an incipient flare. I was reducing to 2.5 from 3, so I went up to 3.5 (1 mg) for a few days and felt so well that I returned to 3, my last good level and waited there a few weeks before attempting the reduction again. So far I'm feeling good at 2.5, but I have to say it's taken me over three months to complete this taper so slowly slowly really is the key.
I think I maybe tapered too quickly...so anxious to get off of prednisone and it may have been a bad idea. I went back to 3 mg today from 2. In your experience, how long should I stay at this dose to see if symptoms are alleviated? I also was tapering by 1 mg instead of 0.5 which it looks like is a better idea after reading other posts.
If it is going to work you should see some improvement in a couple of days. But no-one can really tell.
Hi,
None if us like being on Pred, but it's a matter of taking the correct amount of it at any one time to control the inflammation produced by the illness.
Unfortunately no-one can say, take these tablets for 6weeks/months and you'll be fine, PMR doesn't work like that. It comes - and goes on its own timeframe be that 2yrs, 4yrs or whatever. So you have to find the lowest dose that controls the inflammation until it goes, and the danger of reducing too quickly is that you go past that point without realising it, so you end up with a flare.
Plus, of course as you get lower, each reduction is a bigger percentage drop each time. (Not more than 10% drop is recommended) Which is why on low doses a 0.5mg drop is better, and preferably a slow plan rather than an overnight drop - easier on the body.
I've just written this to someone else: some very good doctors suggest adding 5mg to the dose at which the flare appeared until the symptoms have improved and then trying back at the last dose at which you did well. That is assuming I suspect that the flare was due to a reduction rather than an increase in the activity of the disease which also happens.
I had a flare in February while I was at 5mg. I had to go back to 15mg to get it under control and it has taken me until now to get back to 9mg with a return of symptoms when trying reductions for a few months - but then, I'd rather have things fully under control, I've been at this for a long time!
I look at the 5 mg advice with the thought that it must apply more to people who are at somewhat higher doses than JSRichter and I. I can't really imagine taking 7.5 or 8 after being below 7 for close to a year, and then dropping back to 3. On the other hand JSR has reduced quite fast, about 6 months faster than I did to the same level....
Yes - but I was at 5mg, not reducing, and 10mg wasn't enough to manage the worst of the symptoms, the breathlessness. The rheumy-trained GP said 15mg even without knowing that. If you add 5mg it clears the build up quickly and then you can go back to where you were on a dose that was managing the daily addition. That may be the dose 1/2mg above where you flared - or it might be more. There is no way of knowing. What you shouldn't necessarily have to do is go right back to the start as I have seen some inexperienced doctors do without trying a halfway house first. But the longer you leave it - the harder it is to control.
I guess I'm thinking about what the sudden increase would do to already struggling adrenals.
Not a lot providing it was only for a few days - they aren't that delicate little flowers!
ok then - but nevertheless I was fine with my very minor adjustment so I guess we are all different.... I suppose if I were to feel a flare coming on say next January after being this low for a couple of months, and not reducing, that could be a situation where the more drastic measures are called for as it indicates an increase in disease activity?
Is it possible to describe how PMR affects your breathing? I frightened my walking group by becoming breathless 5 minutes into a four mile walk last week. It felt as if my diaphragm would not allow my lungs to expand and I wondered whether it was a panic attack After a brief rest I completed the walk with no further incident and no after effects . This is not a regular occurrence and I have the perennial problem of figuring out whether a particular symptom is down to PMR or Parkinsons which, after seven years of googling since dx I have only just discovered causes breathlessness as well.. This breathlessness has been known recently to happen setting off at a brisk pace to the shops. I used to be able to get an inhaler from the GP for use on walks and when but I don't think this is approved of now. If I chose my GP carefully perhaps I could be dx with asthma again ( from which I was cured with a stroke of the pen some years ago) on the strength of my naturally low lung capacity - 350 at best.
II have always relied on a second wind to keep my regular position as tale end Charlie on any walk but last week was a bit more alarming than in past years.
I don't see why it shouldn't be approved of - if your lung capacity is low for whatever reason and it improves with an inhaler I'd have thought that was reasonable. Do have a peak flow meter to check?
However - pred can also affect breathing.
I have reduced down to 3mg twice now and last time went back up to 4mg and was ok the left it 2 months and tried again and I had a full blown flare up and so my GP put me back up to 5mg and gave me a blood test which was really bad in fact it was back up to 69 which is higher than when I was diagnosed 5 years ago .What we have to realise is that in some people it doesn't burn itself out at all .I am now determined to stay on 5mgs long term and have a good quality of life and not be in a wheelchair.
Exactly! How long have you had PMR?
hi,
Think you probably meant to send this to PMRpro, not me. I do occasionally dip into the patient.uk site, but not a regular.
Sorry cannot help.
@Elizcarroll: What's your user name over there? Otherwise I can't report it to anyone!
Several people haven't had notifications but have been able to get onto the site and post. There is nothing against sending a link in a pm - unless the recipient found it offensive and reported it. But usually if an account has been deactivated the moderator would contact you to tell you why. It will probably be a glitch.
You haven't told me your user name over there ...
Just read this. Very informative. I just have being woolly headed on 7mg. Tapered to 6mg, got my brains back but pretty certain have flare. So back to 7mg. However tempted to try 10mg for a few days. Will decide on Thursday after doing a Wednesday late physically demanding shift tomorrow.
What made you think it was a flare? Some of the signs of adrenal insufficiency are similar - and may apply each time you change the dose now you are below 7mg or so. And how do you taper?
Advice with flare up?
Think I'm having a flare up
Flare up 
Self inflicted flare up
Flare Up
