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Medicine options for osteoporosis and side effects

Posted , 6 users are following.

tom69030
tom69030

Hi everyone... I have Osteoporosis and my spine went from a 2.2 to 2.9 score so it is getting worse... I do the calcium, D, K2 and biosil.... My doctor wants me to do Forteo but I fear the warning it gives on getting bone cancer.... I am considering doing Strontium Citrate.

My questions to all and hope many will give me their input.

1. Anyone doing Fortoe and have you had side effects?

2. Anyone know of stories of people getting the bone cancer from Forteo and then dying.... I read of one report of this and the Forteo company said the new thing is four in a million get it and die.

3. Anyone do Strontium Citrate and if so have you had good results and has it prevented fractures?

Also any side effects from this?

Those are my bit questions but if someone knows of a better option that builds bone density and prevents fractures and is proven with no side effects please let me know and thank you. 

Tom

1 like, 15 replies

15 Replies

  • Anhaga
    Anhaga tom69030

    Posted

    How long did it take for the change in your spine density to be noted?  Was the reading done on the same machine?  Are you able to do any weight-bearing exercies to add to your nutritional regimen?  I'd do (am doing) everything I can to avoid having to take any of the OP medications.  Some people seem to take them with no problems, but the incidence of serious side effects, and really, serious irreversible side effects, is a danger that I'm not willing to run.  I have heard that sodium citrate does improve bone density, because it is heavier than calcium and replaces calcium in the bone structure.  It is certainly preferable to the manufactured version of strontium (ranelate), but whether it really makes the bones stronger, I don't know.  If I find that what I am doing for my bones isn't working I will have to try to figure out why.  I have to take prednisone for polymyalgia, which is a risk factor, and maybe there are other factors in my life are contributing to low bone density.  Do you get magnesium as well as some of the other micronutrients required for good bone health?  (Boron, silica, vitamin A - retinol - miixed tocopherol vitamin E, plus microbiota through fermented foods - yoghurt, sauerkraut, kimchi, brie, kefir, etc.).
  • tom69030
    tom69030

    Posted

    Hi

    Two years it too since my last scan and yes it was the same machine.... I too fear the meds.... I do get magnesium as well and do weight bearing exercises ... Will probably start Strontium....

    Thank you for your comments

    tom

    • Anhaga
      Anhaga tom69030

      Posted

      If you want to try strontium the natural form is strontium citrate and it probably works as well as the patented ranelate but with fewer side effects.  Things is, as Allison pointed out, all strontium does is replace calcium in the bones and doesn't necessarily make those bones any stronger.
    • Anhaga
      Anhaga

      Posted

      Just read your post more carefully and I see that you are considering the citrate.  Another thing people might need to consider is what the cause of bone thinning is as there may be something else in an individual's life which is contributing to the problem.  I don't know what those factors could be.  In my case it is probably simply being of a slender build plus having to take prednisone for polymyalgia.  That makes it harder for the good supplements and exercise to work, but I carry on and keep trying harder.
  • allison72169
    allison72169 tom69030

    Posted

    My understanding, from my endocrinologist, is that strontium, being a heavy metal, gives false DEXA readings of BMD. It's evidently not approved in the U.S. for osteoporosis. Maybe in U.K. there's a way to reliaby measure changes?

    Re: Forteo, the problem with it, in my view, isn't the risk of bone cancer, which I think is highly unlikely. Rather, it's that any gains in BMD achieved with Forteo will not be maintained unless you follow up with another, much riskier drug, e.g., a bisphosphonate or Prolia. So while appealing on one level, it seems like kind of a dead end.

    I doubt there will ever be an osteo drug that has no side effects. Still, we could hope for treatments that have fewer, less potentially catastrophic side effects than the drugs available now (which I, for one, have refused to take).

     

    • tom69030
      tom69030 allison72169

      Posted

      Thank you and I had forgotten but you are right Forteo told me all the gains you do make from Forteo are lost within one year..... Why risk anything for this?

      tom

    • LayneTX
      LayneTX tom69030

      Posted

      Gosh, me too Tom. Infact I thought of starting the Forteo tonight. My Rheumatologist prescribed it, I saw my Primary today for my yearly physical.  I told her of my fears. I forgot it risks bone cancer. I asked if she would do it if she was in my shoes. She said she probably will be in my shoes but had already had cancer and radiation, so she probably couldn't take it.

      She did say, after the 2 years of Forteo I'll have to continue with other bone drugs, I guess to "Keep" what we gain from Forteo?  

      She said I must consider if I do break/crush/shatter bone in my spine all the symptoms of that would be way worse.  I told her I was hoping to be able to ride my bike again, but I fear falling.  

      I'm only 55, was pretty active.  BUT, I'm thin, even MORE thin now due to another drug I'm on. So much for living a drug free life.

      SO.... What do we do? Maybe I won't start tonight, perhaps I'll sleep on this decision one more night. 

      Wow...now I wish I wasn't so concerned about my weight all these years, she said larger people don't have as much risk of Osteoporosis.  So, my sister is probably fine. ;>) Heck, I shoulda ate more hamburgers!  (Only trying to make myself giggle here, I mean no offense to anyone)

    • LayneTX
      LayneTX

      Posted

      Well I slept on the idea of starting Forteo, and I'm just not ready. I'm thinking traveling will be more difficult, I'm trying to get over an autoimmune issue as is. So I hope to do some bucket list trips carefully and figure out what I can do with my current quality of life.  

      I had plans of getting back to cycling and maybe a bit of jogging. 

      But now Doctor put fear in me of falling.

      gee wiz, where did my life go? 

      Tom, did you make a decision yet?

    • tom69030
      tom69030 LayneTX

      Posted

      Hi, one more thought... I have been torn for some time on Forteo and does over forty hours of research.... It also turns out just as many people who do take it get no results at all... So it is mixed on if you after all you risk get results.... I am still looking into other ways... Still looking at Strontium Citrate and L Arginine.
    • allison72169
      allison72169 tom69030

      Posted

      I've been trying to figure out reason that would justify Forteo as well. On the one hand, it doesn't make sense that people who are given this drug, many of them because they aren't able to tolerate bisphosphonates, would then be told they "needed" a bisphosphonate to "maintain gains." (Though sometimes a non-bisphosphonate, e.g., Prolia, is recommended ... but that drug has formidable risks IMO.) On the other hand, maybe the Forteo generally does a better job of building bone than the bis- drugs, as its mechanism of action is different; I believe it's often recommended for people with more severe osteoporosis. So maybe there's a subset of people given Forteo who are able to tolerate a bis- drug afterward and for that subgroup the sequence of drugs makes more sense -- that is, assuming that the osteo drugs' risk:benefit profile warrants their use to begin with, which I, for one, am very skeptical about.
    • Anhaga
      Anhaga allison72169

      Posted

      Forteo's potential side effects unfortunately include cancer.  It works by stimulating bone formation, and is better than the bisphosphonates at improving bone density, which sounds like a good thing, but obviously there are substantial risks.  This is probably why it is recommended only for short term use.  I don't know if studies have been done, but could it be used relatively safely provided the patient followed a regimen for building bone naturally so that once the Forteo was discontinued they would already be on a path to continue healthy bone remodelling and not "require" another drug to follow up the Forteo?  question
    • LayneTX
      LayneTX Anhaga

      Posted

      My primary Doctor said I'd have to follow up and continue with the other sustaining drugs.  She said she will have to go through same thing, so I'm assuming she isn't pushing the drugs on me.

       

    • tom69030
      tom69030 allison72169

      Posted

      Not sure if all can read this but I for one am probably going to start strontium citrate as it has more research that L arginine. My new doc who is willing to give me a go naturally wants me to do some blood work and then he will discuss maybe HGH which is a human growth hormone.... For all the woman out there in my million hours of research I have one for you that is proven to work for women only and that is DHEA which you can buy in a vitamin store.... It is medically proven to work. Hope this helps

      tom

    • Anhaga
      Anhaga tom69030

      Posted

      Tom, thank you for that.  I did look up DHEA a while ago and again it turns out to be one of those things that might end up being harmful for some.  I can't remember what the issue was, but I'll see if I can locate the info again..
    • Anhaga
      Anhaga

      Posted

      Easily found.  Mayo clinic lists some possible side effects which are serious enough to make it something I would never consider just for bones.  It can affect levels of lots of other hormones.  May increase risk of some cancers.  Not enough information about long term effects.  Advised to use only with guidance of health care professional.  A vitamin/mineral supplement it is not!
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