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Boniva injections anyone?

Posted , 8 users are following.

carol43293
carol43293

My PC says my dexa scan isn't that bad and my Rhumy says I'm a high risk for a fracture.  So I have an appointment for the injection on Mon.  Has anyone else had this problem?  When I read possible side effects of the injection I really don't want to get it. But a fracture would be the worst nightmare on top of this PMR.     

0 likes, 20 replies

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  • EileenH
    EileenH carol43293

    Posted

    Is the rheumy saying you are high risk just because you are on pred or is your dexascan well into the osteopenia range? 

    I've been on pred for nearly 7 years, I had a dexascan shortly after starting pred and again 4 years later. There had been no change in the bone density readings in that time. I had been given alendronic acid at the start, disliked it intensely and discussed it with my GP who agreed with me - it made far more sense to wait and see if my bone density changed. As it turned out - I didn't need it and had avoided over 4 years of taking a drug with potential side effects in the short term - and unknown side effects in the very long term, which are now beginning to emerge.

    Superb marketing has persuaded many doctors that Fosamax (alendronic acid, a bisphosphonate, Bonviva is a different substance, ibandronic acid, but also a bisphosphonate) could be used as preventative treatment - patients will never break a bone, the risk of hip fractures banished! The decision as to at what bone density you say a patient is at risk was actually fairly arbitrary - people with good bone density break bones, other people with poor bone density do not. Bonviva 

    There are many things you can do that will reduce the risk of breaking a bone that do not involve taking these drugs. It is very much a personal decision but i'm very glad that no-one has tried to persuade me to take any of these drugs.

    Anhaga is the person with all the info about no using these drugs - I'm sure she'll post later.

    • carol43293
      carol43293 EileenH

      Posted

      Thanks for the reply.  Thats what my PC says to wait and see.  But the Rhumy keeps pushing me hard to take the drug.  I think I might wait and see.  Thanks 
    • carol43293
      carol43293

      Posted

      Yes I have Osteopenia not sure how bad but PC says not bad.  Rhumy says osteoporosus. Im confused. But I think I'll wait awhile and possibly explore the other drugs before deciding. Thanks again

       

    • philoso4
      philoso4 EileenH

      Posted

      Eileen, in my opinion you are correct that "Superb marketing has persuaded many doctors that Fosamax could be used as preventative treatment." My rheumy has pushed and pushed me to start on it. The industry has supplied doctors with a simple data input app wherein they enter age, gender, weight, height, bone density from dexascan and the app produces a "risk level" for breaking a hip in the next ten years (if I recall correctly). I turned out as "moderate risk". I asked the rheumy what would be the amount of decrease in risk and over what period of time would that occur if I took the recommended course. He was unable to give me that information, which I believe to be crucial to decision making. But, undeterred, he read me a long piece from an industry article which ended with a statement that justified taking Fosamax because the cost/benefit ratio was good. At that point I told him that I didn't want to hear any more.
    • philoso4
      philoso4 EileenH

      Posted

      Eileen, the actual report words that it was "cost effective" to treat a moderate risk person with bisphosphonate.
    • EileenH
      EileenH philoso4

      Posted

      Whatever that is supposed to mean! Slowly, slowly, the truth about bisphosphonates is emerging. I would consider taking one of them IF my bone density deteriorated. But the advice from the FDA is they shouldn't be used for more than 5 years at a time - had I taken them as offered I'd have had 5 years worth in a period where my bone density didn't change at all despite pred.

      There are people on the forums who have all sorts of problems, from dental problems through shin splints to bilateral fractured femurs which won't heal. Or who have ended up with such severe oesophageal problems they can't take pred. And an orthopaedic consultant was very surprised to hear the stories we are told by rheumies about the risk of fractures. Funnily enough - when it comes to bones I know who I'd believe.

    • ptolemy
      ptolemy philoso4

      Posted

      I think "cost effective" is particularly popular in NICE's literature. I am not sure that the actual patient's needs are involved! Although I may be becoming jaundiced. 
    • Anhaga
      Anhaga carol43293

      Posted

      Wait and see.  But while you wait, if you haven't already, start doing everything you can to improve your bone health the natural way (nutrition, supplements, appropriate exercise).  I have friends who have actually moved from osteoporosis to osteopenia range (and the friend who continues to look after herself continues to see improvement), so I know it can work.  Prednisone is an extra factor of course, so I think I will be happy if I can maintain my bone mass at least. Some doctors are very keen to prescribe the medication.  One wonders why.  My doctor got much more keen after attending a workshop on osteoporosis and I would love to know who sponsored that workshop!
    • carol43293
      carol43293 Anhaga

      Posted

      Thank you so much! Yes I'm taking 1000mg calcium, daily, along with multi vit and taking PT 3 times a week and trying to walk daily if my strength is good.  The info from you people who have researched and are living with this illness is priceless. We just can't rely on our Dr to get us well unfortunately...hope you have wonderful weekend!
    • Anhaga
      Anhaga carol43293

      Posted

      If you want to read all the stuff I've found out over the past few months I could private message you.  Let me know!  Also, there's some good conversations going on over at the osteoporosis and alendronic acid forums.
    • EileenH
      EileenH ptolemy

      Posted

      I doubt it - if so that makes two of us...
    • carol43293
      carol43293 Anhaga

      Posted

      I sent my private email and they are moderating. So guess thats not allowed on here. Anyway as I said I would love to read your articles as it would possibly give me some ammunition when the Rheumy starts pushing.
    • EileenH
      EileenH carol43293

      Posted

      Use the private message facility - click on the grey evelope under Anhaga's avatar on a post. You can put anything you like in a pm since that is just like you using your email to a particular person.

      Every time you post there is a note at the bottom not to share anything you aren't happy being seen in a public forum - I wouldn't want my email address available for some of the people who visit here!

    • Anhaga
      Anhaga carol43293

      Posted

      I'll send my little essay to you.  Two main reasons I do this by private message - it's kind of long for a post, and there is a little bibliography which includes internet links. (Hope this post doesn't get moderated!)
    • Anhaga
      Anhaga

      Posted

      Please note this is just what I've been lreading and learning over the past few months and anything you think is wrong, or would like to add, please let me know.  I am constanty tweaking it!
    • carol43293
      carol43293 EileenH

      Posted

      Thanks Eileen...Yes I have an alias email that I use sometimes... 
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