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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windyshores | @windyshores | Oct 6, 2021

In reply to @dgm123s "Thank you! Which daily shot are you taking and are you having any side effects?" + (show)

Shots are no big deal. I am on my second try with Tymlos. Side effects were too overwhelming on my first try. Now I am ramping up, starting with two out of 8 clicks on the pen and holding at each dose for a week or two. I am up to 5 clicks with no side effects and if I get to 6 I will be happy. Docs are on board with this and one even suggested it. I may still be helped even with 4 clicks, which is a half dose, but am definitely making it to 6 next week.

dgm123s | @dgm123s | Oct 6, 2021

So glad it's working for you! That is my concern the side effects. I had my second shingle shot on Saturday and had severe reactions. Today is the first day that I am feeling somewhat normal

JK | @contentandwell | Oct 6, 2021

In reply to @dgm123s "Thank you! Which daily shot are you taking and are you having any side effects?" + (show)

@dgm123s I am using Tymlos and after initially having some mild headaches the only side effect I have is what people are referring to as "puffy belly". It's basically fluid retention in the belly area. Not everyone has it but I definitely do, as do quite a few others. I never had a rapid heartbeat from it but I may have had some other very mild side effects, so mild that they really were not a problem which is probably why I am not recalling them very well.

If you qualify for your insurance to cover Tymlos then I definitely think it's a great option. If you are on private insurance (I'm on Medicare) there are also grants available making the cost reasonable or even free for some people. Unfortunately, if you are on Medicare the only way to get a price reduction is if your income is below $60,000. Although the initial months are pretty costly, they do put you into the "donut hole" fairly quickly and then the cost is greatly reduced.
JK

dgm123s | @dgm123s | Oct 6, 2021

In reply to @contentandwell "@dgm123s I am using Tymlos and after initially having some mild headaches the only side effect..." + (show)

Thank you for your response
Yes I am on Medicare as well

windyshores | @windyshores | Oct 7, 2021

Radius Assist is available for incomes under $38k for an individual.

tinar | @tinar | Oct 8, 2021

In reply to @windyshores "Radius Assist is available for incomes under $38k for an individual." + (show)

I never heard of Radius Assist. I looked it up. Here is the link - https://radiuspharm.com/radius-assist/

windyshores | @windyshores | Oct 8, 2021

In reply to @tinar "I never heard of Radius Assist. I looked it up. Here is the link - https://radiuspharm.com/radius-assist/" + (show)

The application is online. But I also talked with a rep at Tymlos Together who helped me.

susanop | @susanop | Oct 22, 2021

In reply to @tsc "Hi @susanop. I was following your discussion with @chocoholic. I just started taking alendronate for osteoporosis...." + (show)

@tsc

Hi @susanop. I was following your discussion with @chocoholic. I just started taking alendronate for osteoporosis. The diagnosis surprised me as I was an avid exerciser for years. I was hit with an autoimmune disorder when we were in COVID lockdown. The pain was incredible, I still managed a daily hour-long walk, but that was it for the day. I could barely move. My mother and my two aunts had osteoporosis so family history is there, as well as slight build, etc. I'm on a steroid now to manage my autoimmune disorder = more bad news for the bones. Anyway, I've been researching appropriate exercises, especially the work of Sara Meeks and Carol Michaels. You can google them. Some of Sara Meeks's exercises are posted online, and they are subtle. The wrong kinds of exercises can do more harm than good to those of us with osteoporosis. I also read about Whole Body Vibration exercise for osteoporosis and purchased a vibration plate exerciser online. The studies I read about that improved bone density had participants on the machines 2x a day for 15 minutes, 5 days a week, for a year. I watch tv while I stand on the vibration plate and use the automatic programs the manufacturer said improve bone density (let's hope!). It's not a hardship, but as with everything else, whole body vibration, at the wrong intensity, might not be good for those with frail bones. I'd like to improve bone density and get off the alendronate. Also, bone density is just one indicator of bone health, from what I've read, and it refers to the quantity of bone, not the quality (that's from Sara Meeks). I've been on a plant-based diet for a number of years, but pretty casual about calcium intake. Now, I increased protein and also take calcium, magnesium, Vitamin D, Vitamin K, Boron, L. Reuteri (a probiotic) and plan to add silica soon. References: "Whole-body vibration exercise in postmenopausal osteoporosis, Magdalena Weber-Rajek, et al, "The Effectiveness of Physical Exercise on Bone Density in Osteoporotic Patients", Maria Grazia Benedetti, et al, and "Essential Nutrients for Bone Health and a Review of their Availability in the Average North American Diet", Charles T. Price - Conflict of interest - The authors are shareholders in theInstitute for Better Bone Health, LLC, a nutritional supplement company. Anyway, good luck, and I hope this helps.

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I just saw your response — thank you for this info. Yes I’ve been low on calcium supplements too because I figured my plant based diet was so healthy and I feared calcium buildup in my arteries. I’m still hesitant about calcium supplements. I have an autoimmune disease too (psoriasis) although when I went plant based
most of the skin involvement went away except for a very mild roughness
on my elbows and knuckles, which I keep under control with a moisturizer containing lactic acid (Amlactin) so I don’t use steroids anymore, as they can be absorbed through the skin. It’s interesting to hear about the vibration plate. I do use a weight vest when I walk, from Joel Fuhrman’s site with weights that you can distribute in different places and add or remove to avoid using more weight than your spine can handle. But genes we can’t control! Thanks for your information— it is much appreciated.

lucillem72 | @lucillem72 | Oct 23, 2021

I have osteoporosis from cancer treatments my rheumatologist put me on Prolia and I had 7% increase in bone density in y spine.

dermnurse68 | @dermnurse68 | Oct 23, 2021

Hi
I take the Annual IV Reclast, I am still in the osteopenia and my problem is partly due to the steroids that I was on for 4plus years, this was recommended by my endocrinologist, whom I trust immensely!! It has side effects but it has less than most . I am sure that you have done your research on osteoporosis, but as you age unfortunately it doesn’t get any better, risks of fractures with the slightest movement.
I fell last year going into the building where I worked and broke my sacrum,from a medication that caused severe dizziness ,my Endocrinologist said just don’t fall, I was extremely lucky and it was largely due to the medication I took, and it healed on its own
I hope that this helps