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Thread: Osteoporosis

  1. #1


    Two questions for the nurse: What kind of osteoprosis treatment is generally recommended for patients with SCI? And what risks should I -as SCI- be aware of before starting treatment?

    Background: I am a male/44 yo/C4 quad 27 years post, recently diagnosed with osteoporosis. At first the doctor was reluctant to start a treatment with biphosphonates because of my age (considering the long-term side effects). However, since a recent x-ray shows secondary damage to L1 (compressed 15%), probably due to osteoporosis, treatment was recommended.

    An option to biphosphonates would be injections with teriparatide, but from what I've been reading about this drug and its side effects, it is not necessary a lesser evil. At least not from the SCI-perspective.

  2. #2
    Hello "pmh,"
    I'm not one of the nurses, but I have some personal experience with trying to treat what I consider to be spinal cord injury related osteoporosis. I am a 65 year old male, C-6/7 29 year post injury. Eight years ago, I broke my lower leg in two places after catching my foot on a door jamb. The x-rays taken revealed extreme thinning of the bone. The orthopedic trauma surgeon decided that he could not surgically stabilize the fractures because the bone would not support the necessary hardware. He aligned the legs bones as best he could and sent me home with a boot type cast. After several months of monitoring visits to the doctor and periodic x-rays, the bones healed relatively well aligned. This incident caused me and my primary care physician to consider what I could do to treat the severe bone loss.

    My journey started with a Dual-emission X-ray absorptiometry (DXA, previously DEXA) which revealed severe osteoporosis in my lower spine and both hips. At the time the first line of defense was Foxamx, a bisphosphonate drug administered orally once a week and an increase in calcium and vitamin D3 oral supplements. I took Foxamax for approximately 5 years. I had to quit taking Fosamax because I developed a relatively disregarded symptom of debilitating bone pain. My primary care doctor recommended that I stop taking Fosamax for a couple months and then start it again to ascertain if the bone pain went away with stopping the drug and would return with starting to take it again. I tried this experiment twice and both times the severe bone pain returned.

    At that point, my doctor decided to get an endocrinologist involved. By that time in the evolution of bisphosphonates there were other delivery methods and protocols including daily, weekly, monthly oral drugs and yearly infusions. The endocrinologist was greatly concerned about trying these options for fear that I might experience the severe bone pain for the entire period between injections or infusions.

    Forteo (teriparatide [rDNA origin]) administered for a maximum period of 2 years by daily, home administered subcutaneous injection was fairly new, but seemed a reasonable alternative to bisphosphonate drugs. The two drugs work differently in treating osteoporsis. Simply stated, the bisphosphonates generally just slow bone break down and help to preserve bone density. The teriparatide increases the action of the bone formations cells (osteoblasts) and absorption of calcium that is deposited into the bone, basically rebuilding the thinned matrix of the bone.

    I finished the two year course of Forteo about 6 months ago. My dilemma is to try to go back on weekly oral or yearly infusions of bisphosphonates or try a new drug Prolia that is clinically administered every six months subcutaneous injection. Prolia (denosumab) is a human monoclonal antibody that binds to a protein in the body that helps promote osteoclasts. By binding to this protein, Prolia decreases bone breakdown and increases bone mass and strength. This drug is not without it's side effects that can be extremely troublesome for those of us who struggle with bladder infections since decreased immunity and increased risk for infection is a reported side effect and it is not clear whether this side effect is short (for a while after administeration) or long lived (lasting through the full 6 months after administration).

    I have had a couple follow up DXA exams during my 8 years of treatment that show I am at least staying even and not losing more bone density. I have not had a follow up DXA since completing Forteo.

    After consulting with several endocrinologists and an oncologist (I am 5 years remission from non-Hodgkins lymphoma), I am leaning toward trying a course of Reclast (zoledronic acid, which is still in the bisphosphonate family) the one year infusion and allowing more data to be collected about Prolia's use in the general population.

    I know this has been long, but I hope it has been of some help. I am hoping to hear more about your physician's counsel and decision.

    All the best,
    Last edited by gjnl; 08-18-2011 at 01:12 PM.

  3. #3
    To date, there is no protocol that has a strong evidence base (supported by extensive research) for either prevention or treatment of osteoporosis in persons with SCI.

    There have been some interesting small studies combining the anti-osteoporosis drugs used in post-menopausal women with electrical stimulation...the benefits of the therapy go away if the electrical stim is stopped in spite of continuing the drugs. The e-stim regimens are usually 60 minutes 3X weekly with a FES bike.

    There have also been several small studies (ongoing) about vibrating plate standing programs.

    Passive standing alone does not appear to provide any benefit for osteoporosis, although there are other benefits. Similarly, drug therapy alone has not proven effective, and as you know, most of these drugs carry potentially serious side effects.

    Calcium supplements with vitamin D also have not proven to be effective, and can cause problems with both constipation and increased risk of urinary stones.

    More research is needed in this area. Currently we do not use any of these therapies in the population I work with.

    Here is a good overview article on this from Craig Hospital:


  4. #4
    Thank you, GJ!

    I really appreciate hearing about your personal experience. You provided me with a lot of good information there.


  5. #5
    Thank you KLD for replying. The article from Craig gave some good input.


  6. #6
    GJ, as always, you've added a a wealth of info to the CC knowledge base. Thank you!

    Alas, my vision isn't what it was a decade ago, which makes it difficult, frustrating, and exhausting to follow posts with lots of long sentences and paragraphs and no white space (i.e. blank lines between relatively brief paragraphs).

    I'm very interested in what you have to share but to be honest, I had to give up on your reply to this post because the lines kept running together.

    Would you please help out this aging crip and fan of yours by tweaking the format of your contributions be more web- and aging-crip compatible? I'd, and I believe others, would be very grateful.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar

  7. #7
    Dear "thehipcrip,"

    I understand the problem you describe and in future, I will attempt to make my posts more reader friendly. I have done some editing to my post in this thread and hope it helps a little.

    One problem that I believe contributes to the look of things running together (on this and other message boards) is the double/singe space after a period issue. Most message boards and publishers of many materials have decided to eliminate the double space after a period in a sentence. I personally find it difficult to read and an irritant. This issue has been discussed on a thread on this website. See "One Space or Two Between Sentences."

    All the best,

  8. #8
    I recently had a discussion about this very topic with my doctor. I have had poor bone health for many years, starting long before my spinal cord injury, and because of preexisting damage to my esophagus I am not a good candidate for many osteoporosis medications commonly advertised. Some tests were run recently on my kidneys, for which I had to collect my urine for a 24 hour period to see how much calcium is being excreted. Although it appears that I do not excrete any more calcium than the average person, my doctor prescribed hydrochlorothiazide, a diuretic that is typically utilized as a blood pressure medication. I'm not sure how useful it will be, but apparently thiazides are also used in the treatment of osteoporosis, as they promote calcium retention in the kidney (I would say here watch for stones), and by stimulating bone mineral formation. He said that I should not expect any reversal of the osteoporosis itself, but that further bone loss may be deterred or at least occur at a slower rate. I have not started taking the medication yet and won't know its efficacy for a couple years when another bone density exam is performed, but it may be worth at least discussing with your doctor.
    Somewhere, something incredible is waiting to be known. - Carl Sagan

    How wonderful it is that nobody need wait a single moment before starting to improve the world. - Anne Frank

  9. #9
    Dear God. There's nothing that states that increasing calcium, D3 and to a much smaller %, magnesium is proactive against osteoporosis?
    And the truth shall set you free.

  10. #10
    The calcium and Vit. D supplements I take were recommended by my personal endocrinologist and validated by 3 endocrinologists I consulted with in a bone clinic setting at UCSF (San Francisco). As for scientific literature and papers that substantiate that these supplements are "proactive against osteoporosis," I don't know. I did a quick Google search and one thing that can be said, is there is a lot written on the subject.

    As an aside, if Prolia is prescribed, it is part of the protocol to get regular blood testing to check that Calcium and Vit. D levels are adequate, because there is a component of calcium stripping with the treatment. The Prolia website states:
    "Even if you take a prescription treatment for *postmenopausal* osteoporosis, you still have to get enough calcium and vitamin D daily. You need both calcium and vitamin D—not just a lot of one—because they help in different ways.
    -Calcium makes up a major part of your bones and helps keep them strong.
    -Vitamin D enables your body to absorb calcium."
    (*It seems the prime target of most osteoporosis treatment is postmenopausal women and very little in other populations.)

    Personally, I have no problem with and see little harm in taking these supplements as an adjunct to other therapies, as long as I know that the levels are within a healthy range as determined by scheduled monitoring.

    All the best,

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