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Steroids for life!

Posted , 13 users are following.

andrea93419
andrea93419

Hi All,,, I'm just wondering how long we can stay on prednisolone to control our PMR??,,, 5 years, 10 years or in my case even 20 years as I was diagnosed at 50 years old!! I'm down to 6mg but often have to return to 10mg when the going gets tough!!! There isn't an alternative drug for PMR I've tried methotrexate but that didn't really help only nearly screwed my liver! Why I asked I'm thinking not to  bother saving my pension plan to get at 67 years when my state pension kicks in, but to spend it now as I don't think I'll reach old age on steroids!! Many thanks for your thoughts Andrea xx

2 likes, 19 replies

19 Replies

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  • jeanne333
    jeanne333 andrea93419

    Posted

    Murphy's Law .. if you spend the money now you will live to be 85 + .. it is all a crap shoot .. but in my book .. the quality of life is what is important not the length ..
  • tavidu
    tavidu andrea93419

    Posted

    Hi Andrea. Can understand why you are thinking this way but I would stick with paying into the pension scheme. You are still young. I felt like you when I was 50 and I am now 66 and loving retirement. I have been on preds for 2 + years and am still on 13mg and can't drop but as you are on 7mg hopefully your adrenals are kicking in. I have always been advised that the preds won't kill you but its what the preds are hiding that might, which unfortunately you can't do much about it.
  • iellen32
    iellen32 andrea93419

    Posted

    Yes, Andrea, here comes the old question as Hamlet said: "to be or not to be"....😊

    Keep healthy, keep well. 🌸

  • Anhaga
    Anhaga andrea93419

    Posted

    Okay, how many of us have heard people say, if I'd known I was going to live this long I'd have taken better care of myself.  Applies to financial health as well as physical.  You don't have to spend a lot of money to have a good time.  Find something that lifts your spirits and do that.  I joined a community choir, for example.  You may find a sweet thing to do that doesn't cost much and prevents you from compromising what could be a pretty good old age.
  • Silver49
    Silver49 andrea93419

    Posted

    That's a difficult question to answer. I am retired and had been for several years before diagnosis. The stress of work would be lifted when you retire and may mean the PMR improves. Would you then have the worry of little money which would bring a different stress? I can't advise only give thoughts.
    • erika59785
      erika59785 Silver49

      Posted

      I tend to agree with you on this subject.  Less stress more well being.

  • FlipDover_Aust
    FlipDover_Aust andrea93419

    Posted

    PMR isn't going to kill you... neither will the steroids - it's the co-morbidities that will do that! Keep taking care of yourself and you'll live a long life... might as well make it as financial as possible - keep saving that pension plan!

    (how old are you?) I was 51 when diagnosed and I'm not planning on suffing out any time soon.

  • andrea93419
    andrea93419

    Posted

    Thank you all for your comments!! 

    I asked the question when I was feeling really down,,,,,,  just come off methotrexate and my anxiety levels must have been rising!

    Im 51 Flipdover, so I'll be on steroids for many years probably! But as you say if I look after myself I should be ok!

    thank you all Andrea xx

    • FlipDover_Aust
      FlipDover_Aust andrea93419

      Posted

      yeah, I figured you were in a bad place.... been there, done that.. got the T-shirt. I have/am really struggling with my 'new normal...' I don't like it one bit. 

      I was unwell for most of last year, and I hated my job - had no reason to go... I wanted to' retire' and stay home... thankfully a change in medication (I was put on MTX to reduce my pred dose) helped me phsyically and I changed jobs and now I'm loving it so much I am almost annoyed I'm going on a couple of weeks holiday next week!

      So, how much things can change in a few months?..... I still feel angry and despondent at times that my life is not what I thought it was going to be at this age, but I am grateful that it is not terminal, and optimistic that I will recover and get my life back on track at some point.

      Remember, it's not cancer. You are not dying from it, even though it is really bloody awful to live with.  

    • andrea93419
      andrea93419 FlipDover_Aust

      Posted

      Yes FlipDover! You've nailed it, that's exactly how I was feeling! We get these 'dips' don't we, it's all part of the condition apparently. Yes it's not terminal, just a condition as my husband says! I'm feeling much better today, been off methotrexate for 2 weeks and need my blood and liver checking tomorrow, so hopefully I'll stay 'positive' after the results!! 

      Many thanks it's good to know I'm not alone! Andrea xx

    • FlipDover_Aust
      FlipDover_Aust andrea93419

      Posted

      I don't have my sh$t together, don't worry about that!

      Every day I hate my life/body/PMR/drugs......

      I don't feel like 'me'. My brain is addled and I don't know if it's the drugs or the condition. Maybe it's just me... maybe I'm depressed.. I just don't know anymore.

    • Anhaga
      Anhaga FlipDover_Aust

      Posted

      Is this the place for a good whine?  I can contribute.  Spent better part of a year trying to counteract bad effects on bones of prednisone.  Now I find I have a high, nearly toxic, level of vitamin D in my blood.  This is not good.  Probably caused by what I thought was an irrelevant condition I was diagnosed with decades ago but had no symptoms (sarcoidosis)..  Now I don't know what to do, except stop all D supplementation and also temporarily suspend calcium supplements.  Grrrrr. frowncry
    • FlipDover_Aust
      FlipDover_Aust Anhaga

      Posted

      how much Vit D were you taking? I'm taking a fair bit these days as what ever the 'recommended daily dose' on the bottle was, it wasn't enough for me...
    • Anhaga
      Anhaga FlipDover_Aust

      Posted

      I was taking two oily 1000 capsules, plus the bone supplements added another 1000, and I guess food would have been close to 1000 as well.  But even 4000 isn't considered an unusually high dose.  You can get up to 10,000 on a sunny day. The measurement was taken around the time our sun was returning so that wouldn't be a factor.  I have to believe it's my body malfunctioning and sarcoidosis is the logical explanation.  It would also account for anemia (I've always had trouble maintaining a good level of iron) and bone thinning which could have predated pred.
    • FlipDover_Aust
      FlipDover_Aust Anhaga

      Posted

      hmmm, that doesn't seem a large dose - I am on 5,000 IU/day, which is the new recommneded daily dose I think.

      Nothing makes sense does it?

    • Anhaga
      Anhaga FlipDover_Aust

      Posted

      There's a program at our local hospital for people diagnosed with low bone mass and/or osteoporosis which I'm finally able to attend - eight months after my DXA scan!  Although I've little expectation I'll learn much I haven't already discovered for myself, I hope I can ask some questions about what to do about my particular supplement dilemma. The first of two sessions is this coming week, so good timing.  
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