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Struggling with making an osteoporosis treatment decision
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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I hope you find clarity with some of them that share their experiences right now I’m still on alendro.. once a week I’m still taking calcium the proper way I hope I’m doing it right lol and trying to get my calcium with food and trying to work in exercise It’s not that I’m not active I am very active moving around just not exercise and been busy I don’t have a good diet plan and was forgetting my calcium pills daily etc. we shall str if that helps from loosing 😩
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3 ReactionsI have an appointment to get it at the end of the month. I look forward to the responses you receive. Have reservations to say the least. Thanks
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1 ReactionYou sound like me I had the same experience when I talked to a specialist Evenity was all she really offered.
I kept trying to ask about options and she finally made an appointment with a Pharmacist for me.
I found this most helpful. The Pharmacist took the time to explain options. I decided on Alendronate it seemed the least scary to start with.
However I still can’t get the courage to take that first pill.
@blblbl27 Research shows it is better to start with a bone builder like Tymlos, Forteo or Evenity. If you take alendronate first, it may affect the effectiveness of these bone builders in the future, according to my doc. You can watch Dr. Ben Leader's video online about Sequencing and Combinations, or get Keith McCormick's book "Great Bones" at your library or online.
It depends on your scores and fracture risk of course.
I chose Tymlos because I could start at a low dose and move up. The injection pen has "clicks" to measure dose and 8 clicks is full dose. I started with two and got up to 6 or 7 for most of the time I was on it. I have done a few full doses. I had a 20% gain in my spine and went from severe to borderline osteoporosis there.
This may be a good route for anyone who is scared. You can follow up in 18-24 months with alendronate and at some point maybe take a break, my doc says.
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2 ReactionsThank you
When I took fosanex , it rotted my jaw and broke my teeth (about five years into it). This is a very common side effect. I would advise you to ask your dentist before taking
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2 ReactionsYikes that’s my problem- the cures seem worse than the condition.
It really is life changing, honestly I felt threatened, but nobody was threatening me. So I gave myself a pep talk and started researching different alternatives. My doctor recommended Reclast it is a yearly IV infusion. I know that I need to be at peace with whatever I option I choose.
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2 ReactionsThank you for the information.
I’ve been on this for a year now and I also took 2 years ago then I took a break. I can’t say I seen any side effects but what I can tell you most times I took it right but did not read the instruction well about what to take it with. I did not realize other liquids is not good to take with it. That it has to be only water. So I just started on my second year we will see where I stand the first year did not stop my bone loss. But after reading a lot in here I’m going to try and get most with food instead of calcium pills. My sister was explaining she takes k2 with vitamin Ed and that calcium pills builds the outside of the bones the inside still hollow. So this is what I’m going to try and exercise walking and light weights when I can. Hope this helps
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