How Long?

Hi Betty and Koukla!

Betty: your post just reminded me that somewhere - though I'm not sure where - I have seen that \"rattyness\" also tends to be part of PMR. I must also take more notice as to whether my rattyness - for which I am famed :lol: - is associated in any way with the days I take my steroids being as I use ADT! Mind you - with the PMR the pain and frustration at not being able to do things is enough to make a saint ratty.

But having just caught the news from Cumbria on Sky - as long as it just remains as rattyness I guess we shouldn't complain too much.

EileenH

Hi, I was advised when reducing to yo yo (e.g. 5, 4.5, 5, 4.5) doses for a few days and it has helped reduce flare-ups. I also fing that in a combination of 5, 2.5 and 1mg I can reduce by 0.5 mg only each time which also helps. I am down to 4.5 after nearly 2 years (though not entirely pain free) and wonder how much lower can I expect to go?

Hi hillbilly!

Yes - it's quite right that the yoyo technique helps your body adjust to a drop because the difference over a few days is much smaller than just dropping overnight to the next level and staying there. I also mix and match to get 0.5mg differences.

As for how low: how long is a piece of string! The theory has been that PMR burns itself out after 2 years so a lot of drs seem to expect you to be off steroids in that time. However - I'd had it for more than 4 years before it was diagnosed a year ago. And it's still there with a vengeance if I try to go down below my current dose of 13.5mg every second day. There are plenty of other people on this forum who will dispute the 2 year theory, others had it, it went away and then it came back! No-one seems to know if it is more difficult to come off medication if you have had a relapse, nor if you are more likely to have a relapse if you come off too quickly the first time.

It does seem that if you come down too quickly or try to get too low that the PMR comes back and you may have to go back to a higher dose and start over again to reduce. I posted recently about the fact that there is no real association between the level of the inflammatory markers (the ESR and CRP blood levels) and reducing the dose - the blood levels may fall but you still have pain and stiffness or the opposite, you go down a dose and are fine but the markers are high. So the basic advice is: the right dose is where you are comfortable and can function to your satisfaction. There is no point coming down or off the steroids if you are just going to get symptoms again and go up to a higher dose - in which case the total amount of steroids taken in the long run might be higher than if you accept remaining on a low dose. The general opinion is that once you are below about 7mg a day you are on a \"physiological\" dose not a \"pharmaceutical\" dose (i.e. the sort of amount the body functions on anyway rather than a medicinal dose to \"cure\" an ailment) and there are so few side-effects that you don't need to push to get off. Obviously it is better NOT to be taking steroids but many people are on a maintenance dose for years. Some people manage with 1mg per day and are fine but the symptoms return without that - it seems strange but it happens.

Once again, I can't emphasise enough that the steroids ARE NOT A CURE for PMR! They control the symptoms so we can live a relatively normal life. We all react differently to them, just like our PMR varies from person to person, and the difference between men and women is often even greater. It really is a case of \"suck it and see\" - but there is no point in being a hero(ine) and ditching the steroids for the sake of it and getting back to the status you were in at diagnosis! I came down and then off a short course of steroids at the outset and the pain seemed even worse than it had been before - but I really can't say if that was just because I had had 6 wonderful weeks, first totally painfree and then with minimal pain. It was a nasty shock though!

Certainly, though, now you are on 4.5mg a day you are at a much better level in general terms and you can keep trying to go down - just don't force it. If the pain doesn't go after a week or two at the next level down you can usually assume that it is PMR rather than steroid withdrawal and a return to the previous dose would probably be a good idea. Another option would be to try Alternate Day Therapy (ADT) where you take a double dose one day and nothing the next after transferring the day 2 dose to day 1 very gradually whilst keeping the total dose over the two days the same (i.e. 4.5/4.5, 5/4, 5.5/3.5, 6/3 and so on until you have 9/0). This allows the adrenals almost total respite from the steroid dose effect (as long as you take your dose in the morning) and is often used at this level of dosing for people who have to be on steroids for life.

Good lu