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Not joining the zero club

Posted , 16 users are following.

Pamros
Pamros

I'm so diasppointed, managed to get down to 1 mg pred, but two weeks in and it has all come back. GP says try 3mg for two weeks to see how it goes. Oh well, keep trying. Could be a lot worse I know. Just felt like sharing, as nobody else understands. sad

2 likes, 31 replies

31 Replies

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  • jo42444
    jo42444 Pamros

    Posted

    My deepest sympathy. I was down to 3mg and things were going well. Dropped to 2.5 and the pain has come back as bad as it was pre prednisone. I see rheumy next week and see what he says as well as how bloods came back. I hope you will be able to give it another try and have the reduction work.

    Jo

  • lodgerUK_NE
    lodgerUK_NE Pamros

    Posted

    Pam

    I would hit it hard and hit it fast, four or five days at 10mg then drop down by 1mg each day till you get down 3mg and then stop if you feel ok. 

  • karren61208
    karren61208 Pamros

    Posted

    Pam,

    I'm disappointed with you but you have a whole cheering team in this forum. Could you keep us posted how it goes on 3 mg?

    I can't complain because I know others with PMR have had longer episodes of the disease with all sorts of rollercoastering on the prednisone. I started mid June on 15 and got down to 7mg on Oct 18. Then I went up to 8 mg Oct 24 and yesterday went up to 9 mg. 

    Instead of the right side of my body feeling tender, it is the left side now. My rheumy thinks I could have a problem not PMR related since it is my upper leg down to the calf most bothering me but I think it is similar to the symptoms I had before I got treated at all.

    • EileenH
      EileenH karren61208

      Posted

      Your rheumy may well be correct. That sounds like something to offer up to a Bowen therapist to see what they can do. 

      Something called myofascial pain syndrome can cause symptoms that are pretty well indistinguishable from PMR - except sometimes they are one-sided as you describe. Bowen can work wonders there.

  • beatrice74480
    beatrice74480 Pamros

    Posted

    I really sympathise I too have been on 1pred for over 2 months and I am on alternate days now but get into a week of this and my legs at top back muscles are really troublesome when I get up from sitting. I then take 1for three days and onto 1.5 for three days and back to alternate days. We are all different I am into 29months of Pmr and pretty able for 75yrs old play out door crown bowls for 4hrs at a time and do reasonable walks most days. I have started taking paracetamol when painful instead of upping Pred,which is what Rheumy advised. Trial and error to suit each of us I think.Good luck
  • pauline36422
    pauline36422 Pamros

    Posted

    Me too I got down to 2mg, then had to up to 5.two month back. And just lowering quarter mg on the slow. Stop  routine hope I succeed this time 
  • EileenH
    EileenH Pamros

    Posted

    To add to what I said in my previous post:

    You are not reducing relentlessly to zero when you embark on this journey. You are looking for the lowest dose that manages your symptoms so that you can use it to assure a better quality of life until the PMR burns out and goes into remission. Even so, that may happen for a only few months and then return. You are never really free of PMR unless you are really very lucky and the autoimmune part goes into remission and stays there. Sometimes it does, sometimes it doesn't.

    It is possibly better to accept a low dose for longer than to try to force a reduction that then results in a return of the symptoms - and a return to a considerably higher dose.

    Do try not to get too fixated on "getting off pred" - accept it gratefully if it happens, and while you do have to keep attempting the next step of a reduction or you'd stay on pred for life, if you notice niggles it is probably better to accept this isn't the time this month and spend a few months where you are before having another go.

  • mollycoo
    mollycoo Pamros

    Posted

    Hello Pam,

                     I understand exactly how you're feeling. I tried several times to get  off prednisolone. I'd get to 3mg then have to go up to 4mg, then down to 2mg, and have to go up again. I'm off them now since 12th August.(the glorious 12th) after almost 5yrs, by perseverance and going down in ridiculously small amounts each time and taking it very very slowly, it took ages, but as I say I'm off them now. I still have a small amount of pain, and am very stiff and sore in the evenings, but it's manageable without steroids, so I'm happy. My rheumy used to say if the pain returns go up 1mg for a while, then try again. It can be disappointing, but keep trying, and you'll get there in the end.

    Best of luck.

    Mollycoo

  • Pamros
    Pamros

    Posted

    Thank you all so much for your lovely comments and support.

    I feel really cheered up. Family and friends are kind, but they don't really understand do they. smile

    • lodgerUK_NE
      lodgerUK_NE Pamros

      Posted

      I found that at the beginning which is why the DVD 'Your Not Alone' was made and the book 'Living with PMR & GCA'  - they both work a treat and the book helps us.

      Some of my friends were able to help others who were complaining about aches and pains and told them  - 6 had undiagnosed PMR  - always said  ' knowledge is power' - even though I can be a 'mine of useless information'.

  • Mrs.Mac-Canada
    Mrs.Mac-Canada Pamros

    Posted

    Sorry to hear you've been having this trouble.  There has been talk on the forum lately about having the adrenal testing done. I can't remember the actual name.  Have you had this test?  If not, maybe it would give you an idea of where your body is at as far as response to the decreases.  Just a thought.

    Diana🌸

    • EileenH
      EileenH Mrs.Mac-Canada

      Posted

      I think it is important to not confuse two different things here.

      When you are reducing and get to about 5mg and start to have other, non-PMR type problems - nausea, severe fatigue getting worse not better, for example - then you have to wonder if your adrenals are starting to produce cortisol again. An adrenal function test would be sensible there.

      When you have been absolutely fine at 3mg, or even 2mg, then it is very likely that your adrenals are functioning adequately since your body requires the equivalent of about 7 or 8mg pred and you will have been below that for some considerable time. If you can't get off pred, that is a different matter altogether. There are plenty of doctors who will dismiss a dose of 1 or 2mg as being placebo. Judging by the number of people I've come across who can't quite get off pred - no it isn't. The impression I'm beginning to gather is that for many people the autoimmune part becomes very quiet - but isn't entirely gone so stopping pred altogether brings back symptoms. These are tiny doses, all you can do is manage the symptoms, there is no cure for PMR, so is it so bad to remain at a dose that keeps it at bay rather than risk having to return to a much higher dose because of a flare? What does anybody else think?

    • margaret22251
      margaret22251 EileenH

      Posted

      as the jury is out if i have PMR, and i suspect i do with the symptoms i am having i agree with you.
    • Mrs.Mac-Canada
      Mrs.Mac-Canada EileenH

      Posted

      I totally agree with you Eileen.  Even if it meant staying at a higher dose of pred forever and having a decent quality of life while I'm here I'd do it.

      We all know pred does nasty things to our bodies and if i can minimize them by reaching that lowest dose to keep my body moving then that's what I'm striving for - not necessarily 0 although that would be great

      hugs,

      Dians🌸

    • Mrs.Mac-Canada
      Mrs.Mac-Canada margaret22251

      Posted

      Oh no, I thought your GP decided you didn't have PMR and was doing more investigating!  Did you have trouble decreasing the pred as she wanted you to?   

      Did you ever try the  Bowen therapy that Eileen recommends. I think it is like a whole body therapy based on gentle massage techniques.  Might be good for you even if it just helped you relax.

      Sending you good wishes and hoping you're feeling at least a little better.

      Hugs,

      Diana🌸

    • margaret22251
      margaret22251 Mrs.Mac-Canada

      Posted

      Hi Diana, nope nobody still not sure, i have to go to Chapel Allerton on Wednesday to have some therapy on my neck and shoulders, still waiting outcome of the xrays on back and shoulders and feet again!, i can still move, just, so we will see what happens, i am sure soon somebody will decide whats wrong as its being going on now for 18 months, still reducing at .5mg though as i feel better doing it this way, what i need to know is do i have to get to zero, if so what then.

      Lots of hugs and hope all is well.Mags.biggrin

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