Hello everyone. I haven't posted on this site for ages, mainly because I got confused with using the site. But thought I'd really make the effort and I seem to be there!
I wonder how others get on with reducing the steroids. I am down to 5 mg per day, after starting on 15 mg last October. As I reduce, the symptoms seem to be gradually returning. However, some days are better than others, and evenings are always better than mornings - which I know most of you will recognise. I reduced from 7 to 6 after one month and 6 to 5 after two months. After about a week on 5 mg per day, I found symptoms quite bad, but they seem to be a little better now (after nearly two weeks), and I think this has happened every time I've reduced - except that it's a little worse every time I reduce. I've been advised to stay on 5 mg for two months before trying to reduce again. I just wondered whether others' experiences are similar.
Best wishes to everyone
Brighid
Very similar Brighid - and some people are told by their doctors to remain at 5mg for as much as 6 months! It does seem to work as well, allowing them to then continue their reduction as before. Often the symptoms come back for a short time after a reduction and we tend to suggest that if they improve after about 2 weeks it was probably getting used to the lower dose whereas if the symptoms get worse over that time it is probably you are at your limit for the moment. Wait a few months and try again.
The other point is that the recommended rate of reduction is not more than 10% of your current dose - so at 10mg per day 1mg is OK. Now you are much lower, don't try to reduce by more than 1/2mg at a time. There is an article on the pmr-gca northeast support site (link at the top of the thread) about patterns of taking tablets to make the drop very small and this seems to work for a lot of people - very slow and small drops are more likely to bring success.
The return of the symptoms a bit more at eash drop does suggest you are getting close to a "maintenance" dose. If you overshoot that you run the risk of having to go back to a much higher dose if the inflammation returns. The most common cause of a flare is trying to reduce too far or too fast. If you have to go back to a higher dose you end up taking longer and taking more pred - slow and steady is the name of the game.
Eileen
agree with eilleen stay on 5mg for as long as it takes and 0.5mg should be the highest you reduce at this point . 5mg is a bit of a turning point for your body because your adrenals are trying to kick in again so take your time the pmr does not go because you have reduced the steroid it goes when it burns itself out so you may have to stay on a low dose for some time ,its not a race just a long slow slog !!carolk
Thanks so much to Eileen and Carol for their replies, which are SO helpful. I was just wondering - how soon does PMR burn itself out? I'm sure it does vary, and I understand that it can also recur, and are there many experiences of complete recovery, without needing steroids? Brighid xx
the answer to how long before its burns itself out is like asking the million dollar question no one knows your body will do it when its ready ,yes it can recur after a period of remmission but it appears to be more likely to reoccur if the reduction of steroids is rushed , i have no knowledge of anyone" recovering" without steroids but do remember the steroids have nothing to do wth recovering from pmr its not a cure it only controls the symptoms to make the condition bearable while the body fights the condition in its own time carolk
The medical literature reckons that about a quarter of patients are able to stop pred within 1 to 2 years - anecdotally it seems to be men who tend to have faster recovery times, they certainly react differently both in terms of PMR and reaction to pred from women. A further half or so take between 2 and 6 years to finally get off pred and the last quarter need much longer, some remaining on a low dose )5mg or so)for a very long time, sometimes life.
There are probably a lot of people who never get given steroids at all - either they don't feel their symptoms are bad enough to need treatment and accept them or they are convinced (either themselves or by their doctors) that it is an ineveitable part of aging. Remember grandma and her "rheumatics"? Bet it was PMR. Whether they recover or just live with it isn't really known - by definition they aren't on the radar. I first had PMR symptoms about 8 years ago but it was relatively mild and didn't inconvenience me greatly (just as well as I was really given the run-around by the medical community, my bloods have never been abnormal and I was only in my early 50s at the time so "too young"
. Then it suddenly got far worse a few years ago and I've been on pred since. It's been better and worse - whether it has gone away in the last few years I don't know. I've not been able to reduce the pred enough to find out!
As carol says though - the pred doesn't cure anything, it just makes it livable with. Never forget that in a hurry to reduce the pred dose. It may burn out in time - it may not. He (or she) that expecteth nothing shall not be disappointed!
Eileen