1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Rapid reduction in meds...good idea?????

Posted , 10 users are following.

julian99981
julian99981

Good morning.

I am after a little bit of advice.

I have been diagnosed with polymyalgia for about 4 years now and have had great trouble reducing below 8 or 9 mg daily.

my target by the end of this year is to be on 5mg. I was wondering if it might be a good idea to bite the bullet and reduce rapidly to 5mg and then suffer the pain hoping that my body will adjust over time.

I was just wondering your thoughts on this please

thank you

1 like, 24 replies

24 Replies

Next
  • constance.de
    constance.de julian99981

    Posted

    I think we’d all like to bite that bullet (be done with it all)!  Not a good idea I fear.  The ONLY thing that seems to work is the DSNS method.  Mind you, some do that sort of thing in America (even on the advice of their rheumies).

    Good luck!

  • Anhaga
    Anhaga julian99981

    Posted

    How have you been attempting to reduce?  Do you use a slow method, or do you try to drop by 1 mg overnight?
  • EileenH
    EileenH julian99981

    Posted

    Well I don't agree at all. YOUR target may be to be on 5mg - but you aren't in charge, the PMR is. If the underlying cause is active there will be inflammation - and that is the main reason people get stuck at a given dose, it is the dose they are looking for, the lowest dose that manages the inflammation.

    The literature says that something like a third of patients with PMR still require pred at 6 years. Five percent of us will have PMR and require pred for life. So about a quarter need pred for longer than 6 years but will get off eventually. Four years isn't so bad - and nor is a dose of 8mg really. It is a physiological level dose - and most doctors would be fairly happy.

  • ptolemy
    ptolemy julian99981

    Posted

    Hi Julian, sorry to hear you are having trouble with reducing but I have discovered from bitter experience that suffering the pain is a total waste of time. Once the PMR has got the upper hand it needs bully boy pred to get it back in its place again otherwise it just runs rampant and you will go through a lot of pain unnecessarily. You may have a reduction target but your PMR may have other ideas! 
  • linda17563
    linda17563 julian99981

    Posted

    I am the same as you and struggle to get past 8/9mg....several months ago thought the same thing, would lower (from 10mg) 1 mg per month armed with painkillers, and determined to go through whatever it through at me!.......it through more than I could handle!!....had worse pain than when first diagnosed......am back to 10mg, and as the rheumatologist said to me....you have a life to lead....do it slowly!....and that`s what I am doing.....it determines us the PMR....not the other way round I`m afraid....sad
  • julian99981
    julian99981

    Posted

    Thank you for all your replies and your advice. Reading through your posts this morning the consensus is that I shouldn't reduce too quickly as this will leave me in too much pain.

    Im not sure how long the preds at my previous higher dosage will stay in my body but today is the 2nd day of my reduced dosage of 5mg and so far so good.

    I feel great, yes I have some pain causing discomfort but thats it. I truly expected it to be unbearable which is not the case.

    Fingers crossed it doesn't get any worse and I have to remind myself not to be impatient and not to reduce further still too quickly.

    Thank you everyone for all your advice and help.  

    • RD_Swede
      RD_Swede julian99981

      Posted

      I have now been off pred for 9 years and have had no flareups. I think it is too bad that on this forum there are no more "My stories" any more. If you google pmrgca Northeast you will find the website of the Northeast support group. There you can read my story with the title Ragnar (Sweden). As you see, I stayed a full year at 5 mg due to fatigue. As you write, the message is to take it veryyyy slow when you reach 5 mg. I think it is much better to feel OK and have no pain than rushing the tapering and have (terrible) flareups. 5 mg is a low dose and won´t hurt you.

      To Eileen: I think it is very good that you describe directly what to do without "going around the bush"

    • constance.de
      constance.de RD_Swede

      Posted

      I miss the “chatting” on here too.  It was good to hear how people were getting on (apart from the illnesses).  Life in general, the odd joke, the leg pulling, etc.

      Hope life is treating you well and that you have a great 2018.

       

      Regards fr Constance.

    • EileenH
      EileenH julian99981

      Posted

      Pred doesn't stay in your body for much more than 24 hours - and the effect lasts about the same amount of time, as anyone who has forgotten a morning dose will vouch!

    • EileenH
      EileenH constance.de

      Posted

      You'll have to come over to the HealthUnlocked forum - loads of messing about over there and a few very funny threads! There are things about it that drive me up the wall but it is like a giant support group conversation. The NE forum used to be like that too but since the server problems it is very quiet.

    • Silver49
      Silver49 constance.de

      Posted

      Best wishes for 2018. This left me speechless. My grandchildren had been staying and when I tried to serve up broccoli to the younger one she promptly told me she only has it once a month and that she'd already had it for that month. I'm usually a match for her but not that time! 😳😂

    • constance.de
      constance.de EileenH

      Posted

      I tried that last time you suggested it but I couldn’t ‘ get on ‘ with the site.  I know it’s me and I will try to concentrate this time.  

      How’s life anyway.  Have you had masses of snow?  It’s been a beast over here - flooding everywhere (not in Soest thank goodness).  December was one of the wettest on record (and January hasn’t been much better so far).😡 However, they have promised better weather next week.

      Hope David’s health is improving.

      Have a great, pain free, 2018. . xxx

       

    • EileenH
      EileenH Silver49

      Posted

      "This is the once a month at grandma's"

      And - since you do eat it, you can manage once more. Or go without - granny only has this...

    • EileenH
      EileenH constance.de

      Posted

      We've had far more snow than the last few years - about a metre most places on the mountains. Down we've had a few decent falls but it tends to nearly go and then the next lot arrives. Had about 15cm/6 inches this last week, snowed steadily all day, and now it is dripping all over the place as it slowly thaws. Monday was supposed to be rain from the south but it seems to be retreating. The promised sun yesterday never appeared - the mountains are shrouded in fog. It is doing something further south and west already. Sure that wasn't forecast... Yuk!!

      According to Facebook, 5 years ago today I sat on the balcony in a t-shirt for 3/4 hour and had to come indoors as I was too hot. It isn't likely to happen today! 

    • Silver49
      Silver49 EileenH

      Posted

      Yes. I was a bit slow, Eileen. I thought that one afterwards. The children had made my brain fuzzy!! It doesn't take much though it's definitely improving. The younger one is like me and stubborn and I am usually a match for her. 😀

    • constance.de
      constance.de EileenH

      Posted

      I remember that “5 years ago”.  It was like that here too.  Roll on Spring.💐🌹🥀

       

    • Silver49
      Silver49 EileenH

      Posted

      We are experiencing winter here for a change. I can't remember when we had one like this and just a few miles away it was like a different world of snow a couple of days ago. Cold and very frosty here today. The forecast is for milder weather this week. The skiers are happy at present.

    • EileenH
      EileenH Silver49

      Posted

      When we were students we used to take services at Blairgowrie Methodist Church - and usually drove up to Glenshee afterwards. Even Blair was a different world compared with Dundee. There was always snow in winter it seemed - and loads as soon as you got out of town going north!
    • Silver49
      Silver49 EileenH

      Posted

      You are probably aware that the Methodist Church closed and was sold. It is due to open this month as a restaurant and is owned by Willie Little who is known for his fish restaurant in the Wellmeadow in Blairgowrie. He does have other dishes on the menu!

       

    • EileenH
      EileenH Silver49

      Posted

      No - didn't know! Wonder how much of the interior has been kept.

      The old Methodist church in Dundee became a night club type pub! You prompted me to have a look - and they now meet in a concrete block in the back of the Overgate. 

    • Silver49
      Silver49 EileenH

      Posted

      I'm not sure but I believe the lovely window, pulpit and font have been kept. I have no idea how they have been integrated. I understand an upper floor has been added. The beautiful organ was dismantled and if I remember correctly went to Spain.

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.