question

just discovered this site it was mentioned in a book I purchased,had PMR for over a year now started on 15m of prednisolone and went from struggling to get out of bed etc to almost fit, got down to 9m over about 6 months then from 8m things changed the aches started to return not wanting to stay on the dreaded steroids I continued to reduce until I got to 4m,now I am almost back to square one with mustle and joint pain and the flu like feeling.I have gone back up to 6m but still feel rough should I go back to 9m anyone had a similar experience.

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  • You have been forcing the reductions which with PMR always leads to disaster. No one wants to be on steroids, but many of us will gladly trade in a bit of weight gain, moon face or steroid hump for the relief from so much pain.

    I think that what you will have to do is nothing short of starting all over again. I'm thinking that you are under your GP's care and not a rheumatologist? Whichever, you need to see one or the other and explain that you have had a flare-up from reducing too quickly. From experience I know that you may have to stay on one dose for longer than you did previously, but all that matters is that the inflammation causing the pain is well and truly thumped into submission.

    Not sure what you have read or been told, but the medics agree now that the minimum time for being on steroids with PMR is at least two years. That's a (hopefully) reducing dose. It isn't a ruler-straight reduction to zero with PMR- it's finding the minimum dose on which you can function and staying on it until you are satisfied that the inflammation is being held in check enough to think about reducing the dose. And it should be a very slow reduction too.

    There are several books on PMR, which one have you got?

  • The book is PMR and GCA a survival guide by Kate Gilbert it got me to this forum best thing I have done since this disease mugged me, people who have not got a clue keep telling me how well I look,drives me crazy.

  • As polkadotcom says - none of us wants to be on pred but if the choice is a moderate dose of pred or PMR pain I'll take pred and its downsides any day. I had 5 years of PMR without pred and it was unmitigated hell - it wasn't out of choice, the doctors didn't recognise it. The thought of going back to constant pain and inability to move freely with all the restrictions that brought would make even staying at 15mg for life attractive! At its worst I was housebound - and even there I struggled to use stairs.

    To get from 15mg to 9mg over 6 months is really not bad at all - It took me much longer than that and then I got stuck at 9mg. You need what you need to manage the continuing inflammation - which is topped up every day with a new outpouring of cytokines into the body, they are the inflammatory substances that cause the trouble. That will continue as long as the underlying autoimmune disorder that is the cause of the symptoms we call PMR remains active. In the majority of patients it will eventually burn out and go into remission but until then you will need some pred to wipe up the spillage so to speak. First you get all the existing inflammation under control and then reduce slowly and in small steps to find the lowest dose that will give you the same result as that starting dose. There is no virtue in "putting up with a bit of pain" to get to a lower dose. Some people always have some pain but if it starts to increase again you have gone too low. Maybe you would have been OK staying at one day 8mg, one day 9mg - the difference really can be as little as 1/2mg. Once you get too low the inflammation starts to build up again - and eventually, as you have found, you are back to square one.

    You MAY be able to get it sorted out with a few weeks at 10mg - but it may take going back to the beginning, to 15mg. Everyone is different. But when you try to force yourself to a lower dose that is what very often happens if you don't react quickly enough and go back to the dose where you were comfortable so you end up having to go to a far higher dose to sort it out. The aim is to keep the total dose of pred you take over the entire illness as low as you can - and you fail by trying too hard. As pdc says - sometimes after a flare it is harder to get things under control again, and absolutely the worst thing you can do is get into a yoyo situation with your dose because every subsequent reduction seems to get harder.

    And to answer your final question - yes, there will plenty of people who've had a similar experience and really it is something you only do a couple of times. You cannot fight PMR, it came when it wanted and it will go when it want - absolutely nothing you (or a rheumatologist) can do will alter that fact so you might as well be comfortable while waiting. About three quarters of patients get off pred in somewhere up to 5 years, more or less. Some in a couple of years, most more. And a few of us take even longer.

    This link will take you to a tried and tested slow reduction plan - it will smooth the discomforts of steroid withdrawal and allow you to identify the lowest dose you can manage on very accurately. Lots of people have used it to get lower than they had managed before and it is being used by a PMR research team as well.

    healthunlocked.com/pmrgcauk...

  • Thanks PMRpro will go to 8mg and see if that stabilizes otherwise the way I feel I will not get out of the chair over Christmas.

  • There's no reason why you can't try 10mg for a few days and then drop quite quickly back to 9 and then 8mg. If you go that bit higher you will be feeling a bit more xmassy - but still able to go back down quite easily.

  • Ok will do that I am still in minimum mode must forget that for a while Merry Christmas to you.

  • Just been looking at my notes for CRP levels it was 34 is this average.

  • No idea without the units they measure it in - different countries, even different hospitals, have different ranges. It will always say the "normal range" in brackets after the reading.

    Get out of the minimum concept. There IS a minimum: the lowest dose that keeps you pain-free. Sometimes you have to go above it to get back down to it. And 1mg more that keeps you well and pain-free is far better than 1mg less that leaves you unwell. The use of any drug is based on a balance of the pluses and minuses - the pluses have to balance out the minuses. If you don't take quite enough to manage the pain you will have no benefits but you will have side effects. Take enough and the side effects will be near enough the same - but you will feel better.

  • Thanks again

  • Hi just to add to all of the good advice you have already been given

    I started on 20mg in March this year and got out of pain and stiffness within 6hrs I then dropped to 10mg within 2 months so i thought i was doing rather well, i had put weight on and went back to the gym and struggled !! i have dog so i walk everyday and thought i had keep my fitness up. not so. I then had a fall on my bum and boy did i pay for it took me 2 weeks realise i was having a flare up i only had to go up to 10mg and within 6 hrs i felt better. So 1mg makes all the difference. I think as we (women) put up with pain I am now on 9mg and doing well I am going to Thailand on 27th so will stay on 9mg until i get back.And then drop .5g. I do not want to go back to the stiffence which was really bad for me and the dog suffered. like you i could cope with the pain I didn't even know i had fatigue until the tablets made feel soooooo less tired .

    So be good to your self you are the only one who can

    have a great christmas

    :)

  • Thanks Kay have a great holiday.

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