Struggling with making an osteoporosis treatment decision

Posted by heyhey @heyhey, Dec 15, 2020

I am just struggling to make a decision about my treatment. I had my first bone density test and found I have osteoporosis. I have a couple of -3.2 vertebrae. My hip bones less problematic. I'm 60, active and fit. I've seen an endocrinologist and a rheumatologist who were both highly recommended. Both said "Evenity" before I barely sat down. But there is so little known about Evenity, and nothing known about its long term effectiveness or risk. I've read heart breaking posts from women who were advised to take Prolia with the same assurance and then had multiple debilitating fractures because so little was known/admitted about rebound risk. I am tearful and anxious and sleepless. I've been so healthy my body has carried me through so much life and adventure. I just don't know what to do , whether I'm putting me/my body at risk. Both doctors are paid consultants for Amgen. I feel hopeless and distressed. One of the doctors, although I said I wanted to consider my options, went ahead and got pre authorization for Evenity from my insurance "to show me how easy it would be". I feel cornered. My general doctor also has concerns about me being put on a relatively unknown drug when I haven't tried something like Forteo with a long track record.

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@goodbones

Thank you windyshores! Fractured my humerus last summer...dont want to go thru something like that again...the doc said it was a fragility fracture even though I slammed hard on the concrete--tripped on buckled sidewalk. Osteoporosis showed in spine--dexa was -2.7 ...thankfully the others are osteopenia! Insurance did not approve Evenity...but did approve Forteo...was told about Eli-lily co-pay assistance card...amazing!!! My copay with insurance was going to be $2200 a month (yeah right)..with the copay assistance card...$4!!!! Such a blessing!!! How long did you try the Forteo?

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Hi Good Bones!
I just wanted you to know that I have had no trouble taking Forteo over the past year. It was recommended for me many years ago & I declined. However my scan of 14 or more months ago showed -3.5 in my spine & my other readings were also osteoporosis. I decided that it was time to try Forteo. I plan to have another DEXA scan in the next couple of months & will report on my results. Take care, Linda

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@bee1950

Hi Good Bones!
I just wanted you to know that I have had no trouble taking Forteo over the past year. It was recommended for me many years ago & I declined. However my scan of 14 or more months ago showed -3.5 in my spine & my other readings were also osteoporosis. I decided that it was time to try Forteo. I plan to have another DEXA scan in the next couple of months & will report on my results. Take care, Linda

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Thank you Linda! Praying for good results on your dexa!!

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@maggieb892

2 years ago, I pushed for testing to see why I was leaching calcium. I discovered that one of my parathyroid glands was enlarged. It was removed and I had improvement in my first dexa scan. I am having my second dexa scan this week. Because I lost enough bone to cause osteoporosis, I started Fosomax, but hope to be finished soon. Sometimes, the parathyroid gland is the cause of the calcium loss.

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Thank you for the hugs! I had my dexa scan and the results don't show a significant change. I see my endocrinologist early next month. Initially, the doctor thought I'd be on Fosomax for 5 years. I guess I wait and see!

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I as recently diagnosed with osteoporosis brought on by prednisone for poly myalgia. This caused osteoporosis whereas before I had only osteopenia. Later found out I was misdiagnosed and now a rheumatologist is taking me slowly off the prednisone. I then had a consultation with an endocrinologist who specializes in osteoporosis who immediately said I needed to be on Evenity. I am not going on this drug for multiple reasons, one of which ( like your doctor said) the drug is relatively new. The FDA approved the drug but with the stipulation the company would provide two detailed updates of the drug at the five year mark. So the rationale for me is to only take a drug where the long term effects are known. Also, what concerns me is how quickly my endocrinologist recommended it to me. Maybe he is a paid consultant for this drug. Lastly, I have been doing research of reading many scientific journal articles about how to build up bone with changing my diet without using these potentially dangerous bone medications. This is what I have come up with so far.
1200 mg calcium citrate daily
One multi vitamin
200 mcg K2. This is key as this supplement directs the calcium to the right places in your body, for example depositing it to the bone and not the soft tissues like the arteries and blood vessels) ( atherosclerosis).
6,000 iu Vitamin D3
10 to 20 grams of collagen ( Type I and Type II only)
Increase protein to be included with every meal
600 mg Magnesium glutamate.
One final note, I also go to a holistic clinic and they are helping me tpstop bone thinning plus rebuild the bone without bone medications.

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Unless your D3 is very low, that is, I believe, a very high dosage per day.

If your bone density is poor due to prednisone, you could consider Tymlos or Forteo, which build bone using the parathyroid pathway.

I post on this forum to let people know that fractures can happen really easily once bones get to a certain point (for me mid to low --3's). I have several spinal fractures and you are never the same. You could do your holistic regimen with meds and after meds if you so chose!

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@cookiegirl1944

I as recently diagnosed with osteoporosis brought on by prednisone for poly myalgia. This caused osteoporosis whereas before I had only osteopenia. Later found out I was misdiagnosed and now a rheumatologist is taking me slowly off the prednisone. I then had a consultation with an endocrinologist who specializes in osteoporosis who immediately said I needed to be on Evenity. I am not going on this drug for multiple reasons, one of which ( like your doctor said) the drug is relatively new. The FDA approved the drug but with the stipulation the company would provide two detailed updates of the drug at the five year mark. So the rationale for me is to only take a drug where the long term effects are known. Also, what concerns me is how quickly my endocrinologist recommended it to me. Maybe he is a paid consultant for this drug. Lastly, I have been doing research of reading many scientific journal articles about how to build up bone with changing my diet without using these potentially dangerous bone medications. This is what I have come up with so far.
1200 mg calcium citrate daily
One multi vitamin
200 mcg K2. This is key as this supplement directs the calcium to the right places in your body, for example depositing it to the bone and not the soft tissues like the arteries and blood vessels) ( atherosclerosis).
6,000 iu Vitamin D3
10 to 20 grams of collagen ( Type I and Type II only)
Increase protein to be included with every meal
600 mg Magnesium glutamate.
One final note, I also go to a holistic clinic and they are helping me tpstop bone thinning plus rebuild the bone without bone medications.

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I'm with windyshores on this. The vitamin/mineral regimen you list is fine but in all likelihood, it will not build your bone back. I so regret going the natural route and not starting medication earlier. I was absolutely determined to do it naturally and worked my tail off with targeted and consistent exercise and stellar nutrition. I ended up going from -2.8 to -3.2. Had I gone on Forteo right away, I would have built enough bone to be out of osteoporosis. After two years of trying to do it on my own, I ended up on Forteo anyway. I had no side effects and had enough gain to get me back almost to the levels I started this journey on, -2.9. Big, big regrets on not starting sooner.

Regarding vitamin D~ there have been some recent studies indicating that high vitamin D levels actually increase fall risk. There's a lot of disagreement between the medical and holistic communities on appropriate levels. Best to have your levels tested to find out if it is sufficient and then supplement as necessary. If you find that you need to raise your levels, each 1,000 IU will raise your level by approximately 10/ng/ml so it's somewhat easy to get to the level you are looking to achieve.

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Hi - In your natural regime, did you ever try a collagen with Fortibone? I've read a NIH study that showed this, with calcintronin, a hormone increased BD and it also did without the calcintronin but to a lesser degree. I just learned I was -2.9 for my lower spine last week and my doctor, in an email, said Fosamax would be good. I prefer natural but will go on a medication if needed.

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@teb

I'm with windyshores on this. The vitamin/mineral regimen you list is fine but in all likelihood, it will not build your bone back. I so regret going the natural route and not starting medication earlier. I was absolutely determined to do it naturally and worked my tail off with targeted and consistent exercise and stellar nutrition. I ended up going from -2.8 to -3.2. Had I gone on Forteo right away, I would have built enough bone to be out of osteoporosis. After two years of trying to do it on my own, I ended up on Forteo anyway. I had no side effects and had enough gain to get me back almost to the levels I started this journey on, -2.9. Big, big regrets on not starting sooner.

Regarding vitamin D~ there have been some recent studies indicating that high vitamin D levels actually increase fall risk. There's a lot of disagreement between the medical and holistic communities on appropriate levels. Best to have your levels tested to find out if it is sufficient and then supplement as necessary. If you find that you need to raise your levels, each 1,000 IU will raise your level by approximately 10/ng/ml so it's somewhat easy to get to the level you are looking to achieve.

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Good evening @teb and @cookiegirl1944. I commend your both for doing your homework and checking out everything that might affect your bone health. And thanks, once again to @windyshores for sharing her experience with others. We all have to make our own decisions and then evaluate the outcome. I truly believe in shared decision-making with our medical professionals......they are my true health partners.

My purpose this evening is to mention my vitamin D3 experience with my new endocrinologist at Mayo Clinic. He strongly suggested that I avoid not only the falls but also the cognitive decline issues that are associated with way too much D3. I was taking 5,000 IU. He wanted me to reduce it to no more than 1,000 IU daily. There was no reason to disagree with him. And so I immediately adjusted my dosage. Then my life partner was told the same thing by his PCP. Evidently, there is substantive research that supports this recommendation for folks who are in our age bracket.

Please validate the research that you have found and do whatever is necessary to avoid an inappropriate and unwanted response from D3.

May you all be content and have a life of peace and ease.
Chris

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@windyshores

@yani2023 there are several medications that are possible, depending on how significant your bone loss is. Did you see an endocrinologist?

With the added complication of immune suppressants after kidney transplant, I would try to see an endocrinologist - maybe in the same hospital system that you had your kidney transplant.

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Thank you for your reply. I had an followup appointment with my nephrologist. Medication Mycophen Acid/antirejection medication was doubled as antibodies were found in blood work.. Was very concerned that I would once again have body and hand tremors. I Prayed all night after taking double dose and luckily my body must have gotten used to this anti rejection medication. No tremors YEAH!
I will be seeing a more local endocrinologist who specifically treats kidney transplant patients.
From other transplant patients I have spoken to it appears endocrinologist are prescribing Prolia. What about biophosphates. Taking Prolia injections scares me to death due to the side effects. I read research studies from different hospitals Teriparatide injections may have promising results. Understandably each person may have different result. In 2023, There is no absolute consensus has been reach as to the best medication for osteoporosis. I will have to take the leap of faith and hope which ever medication I decide to take will not affect my new kidney.

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@artscaping

Good evening @teb and @cookiegirl1944. I commend your both for doing your homework and checking out everything that might affect your bone health. And thanks, once again to @windyshores for sharing her experience with others. We all have to make our own decisions and then evaluate the outcome. I truly believe in shared decision-making with our medical professionals......they are my true health partners.

My purpose this evening is to mention my vitamin D3 experience with my new endocrinologist at Mayo Clinic. He strongly suggested that I avoid not only the falls but also the cognitive decline issues that are associated with way too much D3. I was taking 5,000 IU. He wanted me to reduce it to no more than 1,000 IU daily. There was no reason to disagree with him. And so I immediately adjusted my dosage. Then my life partner was told the same thing by his PCP. Evidently, there is substantive research that supports this recommendation for folks who are in our age bracket.

Please validate the research that you have found and do whatever is necessary to avoid an inappropriate and unwanted response from D3.

May you all be content and have a life of peace and ease.
Chris

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Thanks for posting the info on D3. I currently take 2000. It’s such a balancing act. I was willing to pay for Forteo because it doesn’t damage your jaw. I want to keep my brain in top shape , so I’m going to check about D3 dosage. Thanks again.

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