Alendronic Acid - to take or not to take?
Posted , 13 users are following.
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
david64576 GeordieJane
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EileenH GeordieJane
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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.
EileenH
Posted
You might find this thought provoking:
https://www.betterbones.com/osteoporosis/osteoporosis-risks-vs-benefits-of-osteoporosis-drugs/
GeordieJane EileenH
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GeordieJane EileenH
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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 GeordieJane
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BettyE Anhaga
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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 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 EileenH
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Michdonn GeordieJane
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GeordieJane Michdonn
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Jane
Kdemers GeordieJane
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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 GeordieJane
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Anhaga GeordieJane
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GeordieJane Anhaga
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