The Bit I Don't Understand

I accept that the Prednisalone I take is only dealing with the inflammation from the underlying Auto- immune disease and as PMRpro reminds us the disease is chugging away in the background.Then as soon as things are stable we start gradually reducing the steroid dose, until we reach a stage where any symptoms are manageable or are absent.

Does the inflammation stay controlled for a lucky few?

Or has something happened to the disease process while the pain and inflammation is controlled?

What stops the disease jumping up and biting you once you are on a low or nil dose of Pred. ?

Is it a bit of a lottery, are we hoping that the disease has gone into remission?

Just pondering as I micro- reduce.😳

15 Replies

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  • "What stops the disease jumping up and biting you once you are on a low or nil dose of Pred.?"

    Nothing - except good luck!

    Your pred dose is initially plenty to cover the problem, everyone is different and you can't tell in advance how much pred you will need - so you use plenty. It may even be too much. That works for everybody. Then you adjust the level to find the least you need.

    In PMR the pred first has to get all the existing inflammation cleared up - like the spring cleaning. There wont be many/any symptoms because the dose of pred is higher than that lowest dose you will be looking for. The symptoms will reappear when you go below that dose. If you are VERY lucky you will get to almost zero - and still have no symptoms.

    The underlying autoimmune disorder often burns out, just runs out of steam, and stops. Then there are no daily doses of new inflammatory substances being shed in the body needing pred to mop them up. Once that happens you can reduce the pred dose to zero and stop taking it. It is always there, just with a blanket of pred covering it.

    Some people think the activity of the autoimmune part cycles, is more active sometimes, then calms down a bit. While it is less active you can reduce further perhaps - but then it wakes up for some reason and suddenly you have a flare and you need a bit more pred.

    For about 75% of patients the a/i bit burns out in somewhere between 2 and 6 years - and for many, once they get there, however long it takes, it goes to sleep for good. You will be able to reduce to zero and then need no more pred. For an unlucky few it may wake up again at a later date, months or years later, but that is relatively rare. It isn't that the inflammation "stays controlled" - there isn't any being made.

    Not a very good explanation I don't think but does it help?

  • Hi Jane,

    I am one of the fortunate ones who never suffered a flare - why I can't say, only that I started very high (everybody knows the reason why) and reduced slowly, and apparently whether by luck or judgement (probably the former) never got below the magical dose that controlled my inflammation at any one time.

    I have this theory (probably a lot of rubbish) that because GCA patients are started at a much higher dose than PMR patients, the Pred gets a better control of the inflammation initially, and therefore, provided you reduce sensibly it manages that inflammation better all the way through.

    Also, although GCA and PMR are related(?) they are different, so maybe their progression is different. Who knows, not enough research to confirm or deny!

    I'm sure many will disagree, but I can only go by my experiences. My GCA was obviously very well established by the time I was diagnosed (18months), as it is with many people, so maybe that makes a difference, it may have reached its peak, and was already reducing??

    As I've said before I think mine went into remission, burnt out, returned to Planet Zog (or whatever it does) at about the five and a half year mark.

    I'm sure in many people it never goes away, PMRpro would probably vouch for that, although I'm sure she hopes one day it will!

    If you still have the disease, then yes once you get to low doses or nil it will return, but unfortunately we don't know that until the time comes.

    I always say to people mine's in remission, and I am aware that it may re-occur somewhen in the future. If it does, I shall be on it like a ton of bricks, but no point worry about something that may not happen - life's too short!

    Keep micro reducing, and don't worry about tomorrow, enjoy today! 😀

  • I don't think it is rubbish at all. But I also think there are at least 3 forms of PMR which last different lengths of time and perhaps a couple of versions of GCA. But there is really no way of confirming that until they can find a decent marker, not the surrogate ones of ESR and CRP which don't work particularly well anyway.

  • Quite agree, but as we're always saying there never going to be a lot of money spent on research - more's the pity.

    As you rightly say, there are a lot more devasting illnesses we could suffer from, so it's a matter of accepting what we've got, and getting on with it.

  • I think what will happen eventually is that the root of all the inflammatory autoimmune diseases will be discovered. Whether it's something in our modern life, some sort of chemical, or a deficiency of some sort, plus genetic tendencies, or, most likely, a combination, PMR will be part of a whole suite of illnesses which will be understood much better. But probably not in time to help us.

  • Yes - I think improvements in the management of GCA/PMR are likely to come as a result of the very much more general autoimmune research that goes on in parallel.

  • I have read that NPR mostly affects women of northern European descent. I am American but my heritage is Irish and British. Has anyone else read rhis.

  • Thank you for your intelligent thoughts and explanations.

    I think my PMR, like many others, was preceded by a relentless period of unremitting stress. I would feel the adrenaline coursing about in my body. There was nothing I could do to relieve it because it came from duty and responsibility and an awful betrayal by a sibling. I think my body just fused. I believe that this period of enforced rest and re-think has been necessary in a way. Fortunately the blessed relief of Prednisalone was there for the pain. I am hoping that when I get down to a tiny dose, I might be ok. The causal factors have gone, I've made peace with what happened. The inflaming anger's spent. Who knows?

    Of course life can be entirely random and completely unfair and it could be much, much worse.

  • There are a lot of people who have expressed the same sort of ideas about it partly being your body telling you to rest and regroup.

    What is this life if, full of care, we have no time to stand and stare...

  • As my mother once said to me years ago when we discussing the fact that my sister was widowed at a very young age with 3 children under the age of 5 years "nobody ever promised you life was going to be easy".

    Unfortunately that's very true, but it doesn't mean you can't enjoy it most of the time.

    Take care.

  • Lottery??? I'd say you just about got the gist of the whole business. Jerri

  • I have been off steroids for 2 months. Pain in my legs and shoulders is back but at a reduced pain level I would give my pain a 3 out of a 1-10 scale. Just playing the waiting game for now. I really don't want to go back on pred but will if the pain becomes debilitating again. In other words it's a lottery. Good luck.

  • hello katkawon just wanted to say well done in being steroid free as it's uplifting to hear of someone's success with this however short a time off steroids so far. Sorry your experiencing pain right now and hope this will ease up for you soon.

  • Thanks for your good wishes. I hope I stay at this pain level or less. If it gets severe again than I will have no other option. I am not a martyr that's for Sure! 😊

  • I'm on 6.5mg & doing well but feel I should try the next 0.5mg drop, DSMethod of course but just so afraid to Rock The Boat!

    Will see how it goes! 🤦🏻‍♀️

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