PMR advice on steroid reduction

Welcome and I am sorry to welcome you as you have PMR.

However there is a myriad of information about steroids and reduction.

As you will be aware, steroids are not the cure, there is none and no known cause either. Steroids are there to enable you to live your life as near as possible to what it was before, it will never be the same and it is a question of finding where you are most comfortable at. We are all different.

There will be other people along who will answer as well.

If you visit www.pmr-gca-northeast.org.uk there are articles written by patients and medics on steroids and also under Our stories, there is a method which we call \"Ragnar's\". Quite a few people have used this successfully.

The main trick is to go down slowly, perhaps just my 1mg. Decide a day you are going to take the drop, say a Sunday and then go for it, wait abou 5 or 6 days and if the discomfort goes away, that probably means it was withdrawal symptoms, but if the discomfort does not go away, that is the pmr and go back to where you were. If that does not give relief, you may have to up it and start all over again.

Do go and visit the site.

My Rheumy advises that when you reach 5mg, you stay there for three months, then take a 1 mg drop and repeat the three month timetable. And 5mg is classed as a low dose. It is harder to make the drop when you are on a low dose, as the percentage of the drop increases and this is why people experience difficulty.

And please remember do not suffer unnecessarily, steroids are not the enemy, the PMR is.

Welcome to our exclusive club that we don't really want to be members of! You will find loads of information relevant to your question in threads that have been running so do try and find time to read at least some. There is a lot to take in and sometimes there is stuff in the middle of a thread that is relevant so it can take a while to find it. I'll try to summarise the main bits:

I started on 15mg per day last August and am currently taking 17.5mg every second day. I got down to 7.5mg per day by Jan/Feb time but then got stuck - the pain came back when I tried to go down to 7mg per day. It wasn't steroid withdrawal, it started after a few days and got steadily worse over the next couple of weeks until I gave up and went back up. So at the beginning of March I tried something else - I changed to taking double the dose but on alternate days. This is a recognised way of using steroids in other diseases needing longterm steroids and reduces the incidence of side-effects. There is a thread about this somewhere. I changed over a few days to taking 15mg every other day and then have tried reducing the dose again. I got down to 13.5mg every other day and was really well until a few weeks ago when we had exceptionally hot weather here. I had also fallen and bashed my knee and the two together caused a flare in the PMR which is why I'm back up to 17.5 per 2 days. I posted recently on a thread called \"what a difference half a mg makes\".

I've told you this as a comment on your query about going back up. On the site MrsK has recommended there are 2 articles by patients for patients under \"useful information\" on the side bar at the left of the page. One explains steroids and the other is about when to take them. Between them they'll tell you loads about how they work in PMR.

There is no cure for PMR so you are using the steroids to reduce the inflammation that is the cause of the pain so you can move and have a life. If the dose is not high enough, the inflammation gets the upper hand and the pain and stiffness return. It is unlikely you will be totally pain free and the steroids only have a partial effect on the fatigue aspect of the PMR. The trick is to find the lowest steroid dose that gives you an acceptable quality of life whist avoiding the worst of the side-effects. At 17mg every 2 days I still felt quite rough, my legs were heavy and stairs difficult whereas at 17.5 every other day I feel much much better. I went up 0.5 mg at a time until I got there. Now I will wait a week or so and then start trying to go down again.

In your case, I would say you managed a very rapid reduction and that may have actually been fine but now you are having either a small flare or you just did a bit much once you felt good. Either is possible. When I first took steroids I was given 15mg per day for 2 weeks, 10 per day for 2 weeks and 5 for 2 weeks and then stopped because the consultant didn't think it was PMR despite the immediate response of my symptoms to the steroids - pain and stiffness improved within 6 hours! That time I was fine at 10 but the pain in my feet came back on 5mg per day. It wasn't as bad as it had been before but it was there and I was as bad as before steroids within 48 hours of stopping taking them. It has been much more difficult to come down the second time around even though I wasn't off the steroids for long - I went straight to a very helpful GP and told her the story and she put me straight back on them.

If you are happy enough despite the aches on the 5mg I would say stick there. If, on the other hand, you feel your quality of life is affected, try going up to 6mg and see how you are on that, up it again if you have to. How bad are the aches? How much can't you do? It really is a balancing act - but we've said several times here: there is no point taking the steroids at a level that isn't removing at least 50% of your pain and leaving you able to function. You will s

Are you haveing regular blood checks for ESR and CRP ?? to decide when your reductions should take place I am one of the people who only has to have a slight raise in these levels ( well within the norm) to feel achy

My Dr is of the opinion that you should hit it hard so the pain goes away and worry about reduceing after I was on 4mg last Dec went up to 5 over Xmas and in Jan I had gone up to 10mg after a very stressful time but after my blood tests my Dr said she thought I would need 15mg and I did ( I had started on 20mg ) I am now down to 5.5 or 6 depending how I feel

So also have a chat with your Dr but I think the main thing is to function as normally as possible and if it means higher steroids then thats what it has to be Im afraid

Best wishes

Mrs G

Many thanks for all the information.

Hopefully by the time I've worked my way through the postings on both websites, my pmr will decide it's time to go!

I do have blood tests but was told that my levels were not raised initially although I think they have gone down. My doctor is helpful but I have to take a pro-active approach. It is really useful to know how other people aare dealing with steroid doses and that the ups and downs are \"normal\".

I've seen a nutritionist so have a variety of supplements, am trying (willpower permitting) to eat as much fresh food as possible and have invested in some manuka honey so fingers crossed!

Best wishes.

A

I think you will find that Manuka honey very helpful. I have been taking the 10+ Factor for some years and it is particularly useful at helping to keep those winter infections at bay when our immune systems are depleted by the steroids. It is preferable to buy the one with the letters UMF (Unique Manuka Factor) on the label as this is a guarantee of its beneficial quality.

I expect you have had good advice from the nutritionist with regard to anti-inflammatory foods - I particularly stick to lots of beetroot, garlic, turmeric and oily fish.

Hope you have managed to find a dose that is allowing you to feel more comfortable.

MrsO