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Sixteen years and my PMR has now gone pearshape......

Posted , 12 users are following.

BillyP
BillyP

Having had PMR for about 16 years , the last 5 years mostly on 5 mg of a morning,

except for some minor flares that have been nipped in the bud by doubling the daily dose for a maximum of 4 days, I now find I am starting the long haul of reducing from 20 mg daily.

I am saying how could this have happened to me ??? but due to circumstances mostly out of my control,(I really should have twigged that something was happening on the PMR front),the PMR really got a good hold before I did something about it ,A BAD MISTAKE....

​So now I decided to try the new (to me)  slow reducing method.

Previously I have always reduced by one quarter mg per month successfully....

​however,  this scale I am following drops the dose by 1mg in about 52 days.....

First 52 days nearly over and I am not feeling too good.....I am suspecting the drop may be too sudden for me...........

​I am wondering that using this method,  just what is classed as the old and new doses

that other people have had success with..........

​..................Billy.....................

1 like, 30 replies

30 Replies

  • EileenH
    EileenH BillyP

    Posted

    Sorry not quite clear what you mean Billy.

    A reduction using the Dead Slow way over a month from (say) 10mg to 9mg would be like this:

    Day 1  9mg (the new dose)

    Days 2,3,4,5,6 10mg (the old dose)

    Day 7  9mg (the new dose)

    Days 8.9.10.11  10mg (the old dose)

    Day 12  9mg

    Days 13,14,15  10mg

    Day 16   9mg

    Days 17,18  10mg

    Day 19   9mg

    Day 20 10mg

    Days 21, 22  9mg

    Day 23  10mg

    Days 24, 25, 26   9mg

    Day 27  10mg

    Days 28, 29, 30, 31  9mg

    Day 32 10mg

    Now every day 9mg

    By that stage you would probably feel you could now do the new dose of 9mg every day. You can add days from the beginning to make it even slower.  Does this help?

    But really Billy - if your previous way worked why change it?

    • BillyP
      BillyP EileenH

      Posted

      GDay Eileen ..thanks for the reply..

      Maybe I sound a bit dramatic ....but .what interested me about the DSNS was the  dose people are taking.

      ​ ( meaning the amount they are actually reducing  over the cycle of the DSNS). I decided on the 1mg drop

      but maybe in my case I should have gone with 1/2 mg..........

      ​The scale I am using gives the drop over about 52 days, then goes on the lower dose daily.....

      ( The same scale Michdonn has posted..........)

      I take your point about using my past 1/4 mg drop monthly, I just thought I would try the DSNS out of devilment...........Getting down to 10mg is easy ........my problem is getting from 10mg down to 5mg.......

      ​once I am back to 5mg, I am content to stay there for ever considering my age of 80 years.

      ​I hope all that makes some sort of sense , I have difficulty at times putting into words what I am thinking....

      Thanks again Eileen..........

      ....................Billy.....................

       

    • EileenH
      EileenH BillyP

      Posted

      I do 1mg because I have no choice - the tablets can't be cut to do 1/2mg. Most people try 1mg first - if it works they keep on, if it doesn't then they try 1/2mg. 

    • BillyP
      BillyP EileenH

      Posted

      GDay Eileen.......

      May I ask why your 1mg tabs cannot be cut....(is it because there is no slash mark on the tabs)???

      ..................Billy..................

    • EileenH
      EileenH BillyP

      Posted

      The slash is actually irrelevant - I have no idea where the idea came from that only scred tablets should be cut. The manufacturers will tell you the mix is made the same before pressing whatever the shape.The active substance is distributed throughout the tablet.

      No, I use Rayos/Lodotra which has a special coating which disintegrates after 4 hours - cutting it would remove that aspect.

    • BillyP
      BillyP EileenH

      Posted

      That sounds pretty right Eileen.......if the batches were not mixed thoroughly ...the whole tabs 

      could be different.

      I like that coating idea, if only to get away from that terrible taste , apart from anything else...........

  • daniel08939
    daniel08939 BillyP

    Posted

    BillyP,

          You reduce by 1/4 mg per month and it is too fast. The smallest pill I can get is 1mg. I have difficulty cutting them in half but I do and I reduce by 1/2 per month and so far not flares. How do you get 1/4 mg? I am currently at 4.5 mg, no pmr pain but sleep more than 12 hours per day. When I go to 4 mg if pain returns I plan to got back to 5 mg and stay there for 60 days and maybe reduce 1 mg every 60 days. You are doing 1 mg every 120 days and it is not working?

    • BillyP
      BillyP daniel08939

      Posted

      GDay  daniel............

      ​My 1/4 mg per month works great for me......a bit slow maybe ....but what the heck ....I have plenty of time on my hands.............I just thought I would give the DSNS method a go this time........

      ​A good pill cutter is all you need .........not one from a junky shop.........

      Only cut what you need for the day....mostly the residue gets used next day or so.....if you wreck a tab ,just 

      terf it out........( bearing in mind ,pills without a slash should not be cut ,so they say!!!!!!!!!...........)

      I wish I could sleep like that........generally about 4 hours per night sees me out.........

      You sound as if you have things under control..........thanks for the reply...........

      ........................Billy.........................

  • Michdonn
    Michdonn BillyP

    Posted

    BillyP, I been using DSNS since the spring and having good luck. Couple minor flares very thing uncontrol now. I think you should think positive and give it a try.

    https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439

    Good luck think positive and try smiling.🙂

    • RD_Swede
      RD_Swede Michdonn

      Posted

      I am the Swedish guy that Eileen refers to when describing the DSNS method. Next month I have been off pred for 9 years and no relapse says Ragnar with a smile on my face.

    • Michdonn
      Michdonn RD_Swede

      Posted

      Ragnar, I am a guy using your DSNS taper and have a smile on my face. I want to thank you. 🙂

    • constance.de
      constance.de Michdonn

      Posted

      I really don’t know what there is to smile about with this pesky illness!!!!
    • BillyP
      BillyP Michdonn

      Posted

      GDay Michdonn..........

      That is the scale I am using.......I think that works out about 52 days to complete the cycle, then onto

      the lower dose if all goes according to plan........I might limit my drop to 1/2 mg for the cycle and see how

      ​it goes.......... thanks for the reply..........

      ....................Billy.....................

    • BillyP
      BillyP constance.de

      Posted

      I will go along with that ,constance.....

      ...............Billy..................

    • BillyP
      BillyP RD_Swede

      Posted

      Good job there ,Ragnar

      ..........Billy..............

       

    • constance.de
      constance.de EileenH

      Posted

      I know - and I do appreciate life, even as it is, but I have objection to keeping a smile on my face all the time!  One of the most unpleasant people I know smiles all the time and I feel like slapping the smile away at times.  She uses it to show her “superiority” (spelling?).  
    • Rudivl
      Rudivl constance.de

      Posted

      I'm with you there, Constance! Some days it is such a battle and although it is good to focus on staying positive, sometimes we need to cry with each other, as well as smile, if it's not how we are really feeling! I have had chemotherapy and radiotherapy and I know each case is unique but I am finding the PMR journey much more difficult and painful to deal with.  RD

    • constance.de
      constance.de Rudivl

      Posted

      True!  How many people can you have a cry with and you KNOW they understand?
    • EileenH
      EileenH constance.de

      Posted

      Oh lord yes Constance! Couldn't agree more!!!!!! Had a peer at university who was like that - bounced into breakfast with a "Good morning Flowers..." at the top of her voice. Grrrrrr rolleyes

      However - walking down the street with just the hint of a smile does remove those depressing drags at the corner of one's mouth! And removes a load of wrinkles...

    • constance.de
      constance.de EileenH

      Posted

      What wrinkles?!! 😀

      Actually I smile too much when passing people (it doesn’t cost anything).  However, people have actually stopped and asked “do I know you”?  😂

    • EileenH
      EileenH constance.de

      Posted

      They used to look at me as if I was nuts in the UK! But here in Suedtirol - almost everyone greets you in a friendly manner. You can identify tourists at 50 paces...
    • constance.de
      constance.de EileenH

      Posted

      BTW thought I would keep you up-to-date.  Blacked out again (in a supermarket car park) and strangers called the ambulance, much to my annoyance (when I came round).  The result was a ten day stay in hospital and a heart monitor.😡

    • Michdonn
      Michdonn constance.de

      Posted

      Constance.de, life is good my dear, here I am 80 years young having the time of my life. My wife a three time cancer survivor is right here with me. We waiting for the snow to fly so we can jump on our Skis and enjoy the NM winter sunshine; now what could be better than that. My glass is half full. Thanks to Pred. Thinking positive and smiling.
    • Michdonn
      Michdonn BillyP

      Posted

      Yes Billy, 52 days is correct. I used a modified version to shorten the time frame on the higher doses, the system has worked very good for me. You can also lengthen the time frame if you think you are going to quick on smaller doses. Remember it's not a race. Smiling and thinking positive. 🙂

    • constance.de
      constance.de EileenH

      Posted

      Blood pressure drops dramatically.  Blood fails to get to brain (what’s left of it)😀 quickly enough.  Heart in reasonable condition for a 78 year old.  Cholesterol high.

       

    • constance.de
      constance.de Michdonn

      Posted

      Knock the “smiling” off.  Positive thinking is enough.😀

    • EileenH
      EileenH constance.de

      Posted

      That's what was happening to me though I never was so bad as to drop luckily. We rearranged my BP meds and it helped a lot. And it was also possibly part of a flare - it improves at higher pred. Not a lot higher - 7 instead of 5.

    • constance.de
      constance.de EileenH

      Posted

      Unfortunately it has happened about 6 times in the last 3 years and I go REALLY OUT, about 2 to 3 minutes, and when I come out of it I shake and am very disorientated.  I am then quite ill for 2 or 3 days.  If I can get home David and I can cope but when it happens outside someone always phones for the ambulance.  They mean well I know and I’m amazed that so many people want to help.  It has happened 4 times in public and each time it has meant masses of tests and 10 days in hospital.  Such a fag!

      Personally I put it down to bodily exhaustion.  PMR, OA, high blood pressure, high colesterol, GERD and AGE!

      You know me - never know if a couple of grams pred will help or not.  I do up it if I have a really bad day, but I’m not doing too badly on 5 mg at the moment.

      Hey ho - that’s life and I don’t mnd a bit if I can carry on as I am.

      Have a good weekend. xxxxx

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