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Thread: Thoughts on Bisphosphonates

  1. #1
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    Default Thoughts on Bisphosphonates

    I often see people just beginning Wegs treatment being put on Fosamax (alendronate), or some other "bone-protective" drug in the bisphosphonate family. I encourage you to really grill your doctor about this. Putting a patient on these drugs shouldn't be a knee-jerk reaction. Yes, pred causes bone loss. But not everyone will be at very high doses for the length of time it takes to cause serious loss. I question this automatic use, especially for men.

    Bisphosphonates are hardly benign. The risk of atrial fibrillation is increased by 50%. The odds of one of their most serious risks-- osteonecrosis of the jaw-- is increased by taking pred. They don't "protect" the skeleton. They inhibit the bone-destructive cells (osteoclasts). Unless you also stimulate bone production, the end result will still be weaker bones. Their efficacy is highly questionable: The studies showing Fosamax as a miracle drug were both funded by its manufacturer--Merck. No one knows the long-term effects of taking these drugs, whether concerning safety or efficacy.

    Everyone should have a bone density screen within 6 months of starting pred. Sooner, if you're already at high risk for osteoporosis. If the 6-month screen shows minimal loss, it's routine to wait a year and repeat the screen before considering any drugs.

    I began with "supernormal" bone density. I was also on Lovenox (heparin) injections for 2.5 yrs, which cause major bone loss--way more loss than pred will in the same time. I have to do a screen sometime this year, but my Wegs specialist is not concerned. The last test showed some decrease, but even with pred + heparin, the sky was not falling.

    Please don't interpret this to mean that osteoporosis is not a serious risk to those on pred. It can be.

    Weggies who've been on pred for decades probably don't have any choice at this point. I'm mostly aiming this suggestion at those who are new to treatment, or not at high pred doses : Get a yearly bone density screen and if a doctor wants to use a bisphosphonate, get several opinions, including at least one from a holistic doctor about the feasability of using alternatives.

    (And BTW, Weggies do have one factor working in their favor. Being overweight means more load on the skeleton, which stimulates bone growth. Skinny people have much higher rates of osteoporosis.)
    Last edited by Sangye; 07-22-2009 at 08:35 AM.

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    sangye i've been on alendronic acid for just over 2 years now.i had a bone scan about 6 months in which was ok.i did google it at one time and some of the side effects are a bit scary but i've not had any problems so far.
    john.

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    Default So glad you brought that up

    Oh Sangye, I asked that very same question "while you were gone".
    My doc wanted to put me on Actonel or Fosomax. He was letting me decide.
    I was on Fosomax when first diagnosed for about 6 months and it was causing stomach issues so I had a bone density test and everything was fine. So I haven't taken anything for over a year.
    Now they want me to go back on something and I just don't want to.
    I've read reviews from people taking Actonel and 80% complain of muscle pain. I certainly don't want that. I know about the jaw and throat dangers with Fosomax.
    My question is: could we do better with our diet to compensate for calcium loss or whatever it is that the meds take away from us?

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    My bone density scan gave me a score of -5. The scale only goes to -5 as far as I'm aware! Oh dear.
    I have to be very carefull not to fall down for fear of fractures and I've broken ribs on several occasions without even trying. However, I elected to only take the usual Calcium and vitamin supplements on the basis that I'm suffering from too many drug side effects already. I don't know if this was the right decision or not.

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    I've been taken off of alendronate by my respiratory doctor.
    He was worried that it would add to my fertility problems amongst other things so requested a bone scan. I too have super normal bone density so he wrote to my renal doctors and insisted I stopped taking it until bone scans showed a significant loss. My renal doctors weren't happy as they felt it was a good preventative against bone losss but I argued that I would rather risk losing a little bone mass than take another pill which might be doing me more harm than good.

    I guess the reason for my supernormal bone density is the fact I have always been significantly overweight. Woo, being overweight may have actually helped me for once!

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    I was also taken off bisphosphonates after a month or so. A different doctor to the one who prescribed them was very alarmed when she saw that I had been put on them. She said that I was too young (21) and was worried about potential harm to future babies. My understanding is that although they don't know for certain that the bisphosphonates would cause harm, they don't know for certain that they don't. The drugs hang around in your bones for a long time and there haven't been many (or any?!) long-term follow-up studies.

    I am now back on 2 calcichew d3 forte tablets daily. But because DEXA scans still show 'high fracture risk' osteoporosis in my spine I might have to try out the bisphosphonates again sometime. But so far, no fractures!

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    Sanye,

    I knew there was a reason I wasn't skinny!

  8. #8
    Doug Guest

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    Hey, by midwestern standards, you barely are more than skin and bones!

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    Bit of an update on my decision not to take Bisphosphonates.

    I saw the Rhumy at my local hospital yesterday - the one who has organised my bone scans in the past and has an interest in Vasculitis. He was quite alarmed at my decision not to take my once-a-week Bisphosphonate tablet and said that I really did need it. He offered me a once a year infusion instead which would free me up from taking more pills and I decided to go with him on this. However, having read up on the subject, it seems that the intravenus infusion methed has an even higher incidence of serious side effects!

    I think I will have to start taking my medication, but will stick with the once a week pill.

  10. #10
    Doug Guest

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    Good for you! If you can do it, there's no excuse for the rest of us not to do as much. Hope it works out for you. Your other post sounded so good, I'd hope this latest medication development doesn't compromise your "new normal".

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