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Alendronic acid for osteoporosis

Posted , 12 users are following.

isonbeatrice
isonbeatrice

It might be useful to people newly-diagnosed with osteoporosis to know that some patients tolerate alendronic acid so much worse than others that taking the drug is like ingesting poison. For other people, bewilderingly, the drug is fine, the side effects minimal. I was prescribed the once-weekly dose, and fell into the category of those who experience almost every side effect on the list. In the belief that the side effects would be temporary, I took a second dose, had the same problems (primarily a crippling bone pain, a feeling that my entire skeleton was under devastating internal attack), and it has taken me several weeks to get over that. I have investigated several loudly-trumpeted 'natural' methods of healing, and conclude that while they might help, they would not do enough to combat the continuing bone loss. I am investigating the possiblity of six-monthly injections of a hormone-related medication now. The best source of information was for me in the UK the National Osteoporosis Society, a charity which deserves our support. The nurse who answered the helpline was better-informed than my (very nice, very competent) GP. Best of luck to anyone out there with a new diagnosis. You will feel so alone, so shocked and so helpless, so lacking in information, so frightened if the necessary medications have dreadful side-effects and you think you have no alternative. It seems to me that as an individual you have to keep going and keep asking questions until you manage to tailor something to your own condition. Reading about the benefits of exercise and yoga has helped me a great deal (yoga in particular is helpful, and its teachings about the relation of muscle to living bone enlightening), while at the same time I know I need to work to find the right medicine. 

8 likes, 31 replies

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  • kathleen65757
    kathleen65757 isonbeatrice

    Posted

    Have an X-ray as well because the bone density test does not tell the whole story. I have resisted taking the drugs.

    My GP said that if the X-ray showed the bones to be very fragile I would need to rethink my opposition to A A or similar.

    Although there are some back problems the bones were not reported to be thin or frail.

    My bone density result was -3.4 average on back with lower back -4.3. Yet, no mention of bone thinning from the X-ray and ct scan!

    • isonbeatrice
      isonbeatrice kathleen65757

      Posted

      Just looked this up, though:

      Diagnosis of osteoporosis

      Diagnosis of osteoporosis centres on the assessment of BMD. DEXA is regarded as the gold standard technique for diagnosis. The accuracy at the hip exceeds 90%. Residual errors arise for various reasons. Incorrect diagnosis of osteoporosis can be caused by osteomalacia, osteoarthritis or soft-tissue calcification.

      So in what way is an X-ray better than a DEXA bone scan?

    • kathleen65757
      kathleen65757 isonbeatrice

      Posted

      No, never said better! Different! If I had got a result from the X-ray that described bones as thin or fragile then my GP said I would need to rethink my opposition to the Meds.

      I do have osteoarthritis on the back but not the hip.

      You find out different things with an X-ray or ct scan. For example, I have mild scoliosis.

      I am glad to know that there were concerns about my back but no mention of frail bones.

      I take comfort in that knowing that the bones are not the main concern I need to worry about. 

      I would prefer not to have any back issues of course.

      I am in Australia.

  • elizabeth23555
    elizabeth23555 isonbeatrice

    Posted

    This could have been me writing this post as I also had a terrible reaction to AA. Joint pain that eased when I stopped taking the drug. Consultant was adamant that I HAD to take it so I went back on it for a few weeks but the pain increased again. I'm now determined that I will not take it again. I take VitD, VitC and glucosamine. Interesting to read your comment on yoga as I gave up yoga after doing it for about 20 years as I was finding it increasingly difficult with joint pain

    • isonbeatrice
      isonbeatrice elizabeth23555

      Posted

      Yes, I think standard yoga would not be right, and some of its postures dangerous. I bought a book specifically written for osteoporosis sufferers, with different exercises described and pictured for people with osteopenia and osteoporosis. For me, the explanations about the near-immediate chemical effects on bone of one's using one's muscles were so encouraging. To know that within thirty seconds or so of tensing a muscle (in the right way!) you will be affecting the bone gives you a wonderful sense of being able to Do Something! I plan to carry on with this, taking vitamin D, and at the same time adopt the best-possible drug therapy that I can find. 
    • marykelly
      marykelly isonbeatrice

      Posted

      Hi Isonbeatrice ,

      How are you ? Could you please tell me about your book? Yoga for OP ? I would like to by it . Thank you .If you time send me the title and author in a PM ?As I think here will not go through the information .Thank you very much.

  • gaynor76067
    gaynor76067 isonbeatrice

    Posted

    I was prescribed alendronic acid which gave me side effects so stopped taking it. I am now on six monthly injections of Denusonab. Just had my second injection and so far just intermittent aches and pains. I am also prescribed vit D. I am very concious of side effcts with Denusonab but hey ! there is a downside to any drug. It might be worth while you giving it a try. Good Luck
    • isonbeatrice
      isonbeatrice gaynor76067

      Posted

      Thank you - I do hope the side effects lessen. That's the injection which I am hoping to get, too. 
    • faith87650
      faith87650 gaynor76067

      Posted

      Be very aware. Now reacting to injections after 3 years and have to wait possibly two months now for all trace of it to leave my body. Always had a slight reaction each time I had the injection but for some reason full blown side effects now three months after last injection. Very unpleasant. Have to wait Fuce tears and then have another bone scan to see if all ok, good luck
    • kathleen65757
      kathleen65757 faith87650

      Posted

      Thanks. I have been told not to even start so sorry you have to go through this I think it takes a long time to leave your body, much longer than two months!
  • les47
    les47 isonbeatrice

    Posted

    I stopped taking alendronic acid after 12 months as continually had hip pain.  Dr didnt want me to stop as I had been diagnosed with ostiopenia.  I asked him to give me twelve months and could I then have another dexa scan, he agreed.  I started taking with the calcium, vit d3, magnesium and vit K2.  As I have psoriatic arthritis with other tests my consultant gave me Dexa scan (which was 12 months later) I do not now have ostiopenia
    • kathleen65757
      kathleen65757 les47

      Posted

      Now that makes me doubt the DEXA scans! They would not put people on AA with osteopenia in Australia anyway.

      I am trying the natural way too but my results were much worse than yours so it will be interesting to see how I go!

      I also doubt that side effects are rare after reading all the online comments from people experiencing them.

       

    • les47
      les47 kathleen65757

      Posted

      All the best to you and hope your results will be good in the future
    • kathleen65757
      kathleen65757 les47

      Posted

      Thank you les47.

      In Australia you have to have osteoporosis before medication is even considered.

      I have refused the Prolia too which is th six monthly injections. You are stuck for six months with the side effects before you regain control. Then you have th half life. My oral surgeon advised against this because of future necessary   extractions. The jaw can die after you have been on these drugs fo an extended period.

      It leaves us with so few options, actually zero!

    • marykelly
      marykelly les47

      Posted

      Hi les47 ,

      are you still around on the forum ?Could you tell me please what kind of calcium and magnesium are you taking and how much ? It is very interesting that you improved from osteopenia to the helathy status of bones.Did you have your DEXA scan in the same place both times ? Thank you .

    • carrie94038
      carrie94038 marykelly

      Posted

      Hi les47

      ​I would be interested in knowing too.  And if the dexa scans were in the same place.  It would give us all hope if there is indeed proof that the natural way works, and if you were able to move from osteopenia to healthy state of bones.  I have -4 on my dexa scan, not taking the AA, and desperately hoping that what I am doing will help my bones in the future.

      Thanks smile

      ​kind regards Carrie

    • carrie94038
      carrie94038 marykelly

      Posted

      Hi Mariana,

      Thanks for asking the above! smile

      Do take care smile

      ​kind regards Carrie

    • marykelly
      marykelly carrie94038

      Posted

      Thanks Carrie .Just hope she is still around biggrin.

      Kind regards to you too Carrie .

      Mariana

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