Hi all, am now three months into PMR, it's hard to know what to expect, just reduced dose to 10mg, to be fair I had difficult days on 15mg, I suppose it's a balance between feeling \"comfortable\" and having to reduce the dose but is it \"normal\" to have pain and stifness nearly all the time, it's hard to get up and down stairs?
CHeers
Hallo Kimster and sorry that you are so uncomfortable.
I don't hink many people on here will stick out their necks as to what is \"normal\" with anything to do with PMR. It does look as though, maybe, you have reduced a bit fast. Why not ask if it's ok to up the dose for a bit?
Scroll down to Reducing below 3mgs ( about the fifth or sixth on the list, I think. )I did reply to another poster and put up a copy of my reduction experience first time round on there. It might interest you. I see that I went from 15 to 12.5. 15 to 10 does sound a very big jump. Was there a reason for that?
This time I have had different problems than ten years ago most of which have resolved ( touch wood ) when my Doc said to take my Pred. at bedtime. Shot in the dark, he admits but delightted that it seems to work. He says we are all so different and that he stores every unlikely bit of info that comes his way in case it works for someone else.
Best wishes BettyE
Kimster
Sorry to see you are joining a clan, which seems to get bigger everyday.
You are now entering a learning curve and it is a large one. There are no certainees in this curve just one - there is no known cause or cure at present. The steroids alleviate the symptoms and if they are not, then the dose is too low.
The percentage drop is greater the lower the dose you are coming down to and also it can be difficult to distinguish between the pmr pains and withdrawal symptoms.
There will be people along who will give you various patterns to try.
As you are new to PMR I would suggest a visit to this website, www.pmr-gca-northeast.org.uk.
Work your way through the links and always remember knowledge is power and you know your own body best.
Come back to this site, its the best there is for asking questions, however silly you think they are. Someone always has an answer and if not they will try and find that answer for you.
Good Luck and may your PMR take a long walk of a short pier quickly.
Hi Kimster,
I'm agreeing with BettyE and wondering if you came down from 15mgs to 10mgs in one hit and that this was maybe too big a drop, too soon for you. My Consultant started to bring my Prednisolone down when all the pain and stiffness had gone (well, more or less gone!) and I went 15mgs/12.5mgs/11mgs/10mgs over a four month period and I didn't have any problems. I'm now on the slowest reduction known to man or beast but sticking with it as a the Consultant has great faith in it and it does seem to be working. I reduce by just 1mg every 7 weeks and have just embarked on the 7 week treck from 8mgs to 7mgs. As Betty says its just so different for everyone but the idea is for the Prednisolone to help keep the pain and stiffness as bay whilst the PMR hopefully burns itself out (at its own very contrary pace!) so I would certainly get back to the Doctor and tell him or her that you are still suffering. I certainly haven't had any problems leading an almost normal life since starting the reduction. Obviously I have bad days like everyone else but they're few and far between. I do hope you can get this sorted out.
Take care.
Lizzie Ellen
PS: I also agree with Mrs K who was obviously typing away furiously at the same time as me and we've duplicated somewhat :lol:
Hi Kimster!
Welcome - though we'd rather not have new readers you're in the right place to get plenty of help and sympathy, albeit from afar! The first thing I did when I found this forum was to read ALL of it from beginning to end! I don't know if you have done anything like that - a couple of weeks in you may not have had time! I have posted on this subject before so you might have seen that but there is no point at all reducing the steroid dose just for the sake of reducing it. And, unfortunately, there's precious little that can be described as normal with PMR :roll:
PMR is not cured by the steroids: the whole point of them is to control the symptoms to enable you to have a decent quality of life until the PMR decides it might feel like going into remission. This has to be balanced by getting the dose down to the lowest compatible with that aim as steroids do have nasty side-effects, some of them only being a problem at high doses or over a long time and, luckily, not eveyone suffers. However - what is the point of starting you on steroids because you have PMR and then taking the dose down to a level where your symptoms are back? You might as well not have bothered in the first place.
The idea is to taper the dose at a rate that gives your body a chance to adapt to the reduction - and that is not going to be achieved by going down from 15 to 10mg a day all at once. In the UK you get both plain white tablets and enteric coated pills in 5mg, enteric coated pills in 2.5mg (the enteric coating is to provide some protection to your stomach) and 1mg plain white tablets. By using these you can make combinations which mean you can reduce by as little as half a mg per day at a time.
I would say the majority of people can get away with bigger reductions at the slightly higher does - i.e. from 15 to 12.5mg, for example and even then you could take 15 one day, 12.5 the next and 15 again the next and keep alternating for a couple of weeks before going down to 12.5 every day. However, as the daily dose goes down the percentage drop you make becomes bigger if you go down in 2.5mg steps and your body may protest more. As BettyE has said there are several versions of reduction on the forum if you go and look and one lady has written about a very slow reduction which her doctor has recommended as she has had considerable success with it.
Basically, however, the slower the better unless there is a medical reason for getting you off the steroids. The slow reduction is important because your adrenal glands have been suppressed by the fact you are taking steroids at all and they have to have a chance to start functioning again or you could become very ill. That takes time.
If you have pain and stiffness nearly all the time your symptoms are not being controlled by the steroids and that means the dose you are on is simply not high enough. Most of us find a dose at which we are reasonably comfortable and the next level down we're not. That's the sign to go back up to the previous dose and leave it a month or so before trying to reduce again. It's not clear, there's been no study on it, but it does seem that, for some people at least, if they go down too quickly they end up having to go back up to a considerably higher dose to be able to function and the next attempt to reduce is more difficult - another reason not to try to reduce too quickly.
I have had PMR symptoms for about 5 years but was only diagnosed a year ago. I started on 15mg a day, had a sceptical consultant who didn't believe it was PMR and took me off the steroids after 6 weeks only for the symptoms which had disappeared within 48 hours on steroids to be back within a couple of days. I went straight back onto 15 and the journey down has been harder than it seemed the first time. I am now on 13.5mg on alternate days (so 6.75mg/day) which works well most of the time but occasionally I take 15 mg for a few days as I seem to develop unacceptable stiffness and p
its the best there is for asking questions, however silly you think they are
Mrs.K. Cannot resist chipping in with one of my all time favourites
\" If you don't know the answer, it isn't a silly question\"
Hi All!
I see we were all typing away like mad at the same time! At least our stories match!
Now my favourite response is \"No such thing as silly questions - just silly answers.\"
it's nearly 6pm and still 32C - didn't know it was going to be THAT warm, however luckily it does go down to nearly single figures overnight. I'm so glad I live halfway up a mountain - one estate agent here tried to persuade us we should live down in the main Brenner motorway valley as it was \"milder\" for retired people. Hmmm!
EileenH