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Alendronic Acid - to take or not to take?

Posted , 13 users are following.

GeordieJane
GeordieJane

Hi everyone,

I have found this site so useful - thank you everyone for providing this lifeline. I haven’t contributed for a while, so quick recap. I am a 64, fit woman who has always exercised regularly through Dance and gym classes. I have been one of the ‘lucky’ ones in that, following diagnosis, two years ago,  (when the pain was unbearable and I was an emotional wreck) I responded to a very low dose of Pred, 7mgs (October 2016) and have been tapering down using the over the last few months using the DSNS, tried and  tested method with no flare ups. 

I had a dexa scan December 2016. AP spine T score of -2.8. Normal Vitamin D. I was shocked at the results but didn’t feel it could be cortico-steroid induced so suddenly? It was recommended that I take bisphosphonate but, like many on this forum was appalled at the side effects when reading about this medication. Following discussion with my magnificent GP, she agreed she would go with my decision to try a diet, supplements and exercise regime first. (It seems the NHS guidelines are that bisphosphantes should only be taken for a max of 3 years (?) and she was happy for me to take them at a later 3 years should that prove to be necessary). 

However, the wonderful GP has left the Practice and I saw a female locum today who put the fear of God into me stating “It was vital I took the medication (Alendronic Acid) to protect my bones”.......she intimated it was more important than the Pred, Little does she know or understand the pain of the PMR! 

Any advice gratefully accepted.

Kind regards

Geordie Jane

0 likes, 18 replies

18 Replies

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  • david64576
    david64576 GeordieJane

    Posted

    If it helps, I was advised to take a daily dosage of Acreed for bones whilst taking Pred rather than the AA. It was certainly much easier
  • EileenH
    EileenH GeordieJane

    Posted

    Avoid your locum like the plague. Doctors should not blackmail patients with scare tactics to get them to take medications that they feel are "essential".

    What were your other t-scores - do you know? Particularly hip.

    I would suggest that if you never went above 7mg it is unlikely that pred has contributed much to the bone density story - it is a physiological dose, the same sort of amount of corticosteroid as the body produces in the form of cortisol anyway. And if you have reduced further it is VERY unlikely to be doing anything now:

    https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

    Whether you need something to improve your spinal bone density is another matter - but I doubt it is because of the pred.

    And I have to say - I do hope that one day all these doctors who are so dismissive of PMR suffer it themselves And meet similarly unempathetic healthcare professionals.

    • GeordieJane
      GeordieJane EileenH

      Posted

      Wow, thanks Eileen. I will study this with great care and be armed with questions when I meet up with the Osteoporosis Specialist Nurse. 
    • GeordieJane
      GeordieJane EileenH

      Posted

      Hi Eileen,

      Just had a very interesting and informative discussion with the Osteoporosis Specialist Nurse at our local hospital. She looked at my records and confirmed Spine T scores ranging from. -2.4 to - 3. Hip total -1.6. Z scores 95% normal! She wasn’t able to convince me of the statistics supporting the importance of taking the medication. I think I will persevere with the diet, exercise and supplements and avoid the GP locum  on any future visits. At the end of the day, if fit and healthy and following a sensible lifestyle it seems down to luck more than anything else what happens to your bones! 

      Thanks for all your invaluable input.

      jane 

    • Anhaga
      Anhaga GeordieJane

      Posted

      There are a few other things those of us who refuse the meds need to keep in mind.  We need to protect our spine, and this can be done through targeted exercises preferably prescribed by a physiotherapist if possible, but there are good sites on line.  And we need to maintain and improve our sense of balance as falling is the biggest risk factor for fracture, osteoporosis or not.  Tai chi does a little of all the things which are good for us.  There are also yoga exercises which help improve balance.  My tai chi instructor suggested standing on one foot whilst tying up shoelaces but I confess this is now beyond me....
    • BettyE
      BettyE Anhaga

      Posted

      I really don't mean to be glib but, please, which lace do I tie up... the one I'm standing on or the raised one... neither seems remotely possible.

      I seem to remember reading that stairs help our bone density, especially going down as it gently jolts the molecules.

    • Anhaga
      Anhaga BettyE

      Posted

      Haha!  I had assumed the one you've lifted.  Trying to picture the other way. 🤔  As for stairs, going downstairs helps the bones, and going upstairs helps the heart!

      I can actually remember the day at work when I happened to be sitting down when I put on my winter boots and thought to myself, this is much easier....  Little did I know that I was about to lose the ability to put on my shoes as recommended.  

    • margot34956
      margot34956 EileenH

      Posted

      Thanks so much Eileen, I am not going to take any more Fosamax. So glad for this forum!
  • Michdonn
    Michdonn GeordieJane

    Posted

    GeordieJane, please read the side effects. It is a surprising paradox that it is being used to increase bone density may increase fractures. If you are indeed a active person I would study hard before making that decision. Stay active and positive. ☺️
  • Kdemers
    Kdemers GeordieJane

    Posted

    Dear GeordieJane, 

    Have you had previous dexa scans?  Is there a hereditary predilection in your family?  I

    I have been on Prednisone since 2013 and had at least 3 dexa scans. I am 75 and my bone density is within normal levels. I saw my doctor two weeks ago and he wants me to have still another dexa scan this winter. He says we have to keep watch.  I take calcium and Vit D...

    It is a bit confusing but I have two Rheumatologists  and the difference is dramatic. The doctor in the SW insisted I take Fosomax (Alendronic Acid) the first year I saw him.  I told him no, my RN sister-in-law warned me against it. He was furious and continued to make his same statement each time I came in.  Finally I said "Why don't you write down in your report 'Paitient refuses to take prescribed rx' and then you will cover your bases for recommending the drug."  Somehow he stopped insisting after that.

    My doctor I have in the Pacific NW was fine with me not taking it and checks my dexa every time and maybe it will all come at once.  Eileen may know about that.

     I did develop Cataracts and am not sure if it is my age or the Prednisone that caused it.

    I had a  Primary care doctor who put the fear of God in me also--I cannot take Statins --extreme muscle pain almost like PMR--she insisted. Went to a Cardiologist and he put me on Zetia--works beautifully!  You may need to go doctor hunting.

    I wish you the best of luck.

    Kerry  

  • margaret_84727
    margaret_84727 GeordieJane

    Posted

    I take alendronic acid and do lots of exercise too. I hate the weekly standing up tablet as it fills me with flatulence...or it always seems to occur on a Sunday. I admit that if I have anything on on a particular Sunday, I miss it out!!! 

     

  • Anhaga
    Anhaga GeordieJane

    Posted

    Google healthunlocked my osteoporosis journey, for my encouraging no osteoporosis drugs story. 
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