Undecided choice of drugs for Osteoporosis

Posted by peace44 @peace44, Oct 10, 2023

I am 80 years old women and have borderline osteoporosis which affects my entire body. My doctor wants me to take Prolia and the Rheumatologist wants me to take Reclast. I’m unhappy with both choices as the side effects are great and I do not tolerate new drugs well. I am very undecided and am considering doing not taking annty drugs for this condition. I have never had a fracture and I’m very active Any opinions or advice.

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@patrish7

I am 79 and have osteoporosis in hips, spine, etc.I do not tolerate new drugs. Reactions to bothReclast and Prolia seem off the charts. I have never broken a bone and can walk miles., I am terrified of taking one of these many recommended drugs that only seem to help hips. If treatment causes a flair up in my autoimmune diseases (fibromyalgia, polymyalgia rheumatica, etc.) it would mean the end of my walks.. It’s about quality of life. Is there no way to build bone naturally? My Rheumatologist wants me to take Prolia. Any advice? I took fosamax for 10 years and had to get off due to reactions. Bones never improved.

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Thinking of you and so hear you on quality of life! My breast cancer drugs after only one year put me deep into osteoporosis at 58 yrs old. I was terrified of the side effects but my endocrinologist at MGH said it was imperative and I just started with Fosamax. I've only take in twice (one pill weekly) and I have been waking around 3am with a painful heaviness in my legs down to ankles and not sure what to make of it? Apparently Fosamax and Reclast IV might help repair bones to perhaps avoid cancer metastases. Can you share your Fosamax side effects? xoxo

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@koleke

I quit taking fosamax after three years and a minimal amount of bone gain. Currently taking collagen and it's helped me about the same as fosamax in a year. I'm
opting for collagen and weight bearing exercise for now.
Best of luck to you .

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Thinking of you and hoping you could share your "collagen" as so confusing!!!

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@windyshores

@sallyj2 are you sure? Are there other possible factors? I am genuinely curious because everything I have read over the years says effect is zero or negligible. Would you have had to do oral instead?

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I also was told the effect of inhaled steroids was not systemic, but only restricted to the lungs. 9 years later I had my first Dexa scan and found out I have advanced osteoporosis! When I discussed the impact on my bones with my pulmonologist he said, “ Do you want to live?”
So now, like many of the rest of you, I’m reading about all these scary side effects from the osteoporosis drugs. My doctor is starting me on Evenity.

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@jkesparza

I also was told the effect of inhaled steroids was not systemic, but only restricted to the lungs. 9 years later I had my first Dexa scan and found out I have advanced osteoporosis! When I discussed the impact on my bones with my pulmonologist he said, “ Do you want to live?”
So now, like many of the rest of you, I’m reading about all these scary side effects from the osteoporosis drugs. My doctor is starting me on Evenity.

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Mine asked me if I wanted to keep breathing when I started everyday inhaled steroids. Guess what, the way I had used them before worked! Using everyday didn’t change lungs, but ruined bones. And, they are prescribed differently now.

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@windyshores

@sallyj2 are you sure? Are there other possible factors? I am genuinely curious because everything I have read over the years says effect is zero or negligible. Would you have had to do oral instead?

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Inhaled steroids are mentioned as causing problrms in the Coltan’s micronutrient deficiencies book, recommended by Dr. Lucas,

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@sallyj2

Mine asked me if I wanted to keep breathing when I started everyday inhaled steroids. Guess what, the way I had used them before worked! Using everyday didn’t change lungs, but ruined bones. And, they are prescribed differently now.

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jkesparza, when you say "they are prescribed differently now," can you eplain? I am still using every day & now my bones are bad.

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@guinivere

jkesparza, when you say "they are prescribed differently now," can you eplain? I am still using every day & now my bones are bad.

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My doctor now has me use inhaled steroids on an as needed basis, if I have an upper respiratory infection, or if something triggers my asthma. I’ll use a loading dose-several puffs of a higher dose, first day, then normal dose for a few days, then low dose for a couple of days after chest clears. I rarely use nasal steroids anymore, just use saline daily.

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@pedsnurse61

Amy, I also live in South Florida, it is hard to find a MD who will truly listen to concerns regarding OP. I would encourage you to get a second opinion from an Endocrinologist. Reclast is a very strong medication and there are other medications that you might want to consider first, Take your time and do your research. The books that others on this site have recommended are excellent ( I wish I had them when I was first diagnosed 12 years ago). We are all here on this site to support each other and knowledge is power. At this time just be mindful of the exercises you are doing and keep safety in mind.
Lisa

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Can someone let me know the titles of the books pedsnurse61 refers to?

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@sallyj2

My doctor now has me use inhaled steroids on an as needed basis, if I have an upper respiratory infection, or if something triggers my asthma. I’ll use a loading dose-several puffs of a higher dose, first day, then normal dose for a few days, then low dose for a couple of days after chest clears. I rarely use nasal steroids anymore, just use saline daily.

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To jkesparza, I don't think I made that comment re inhaled steroids being prescribed differently now. I have bee taking AdvairHFA for COPD for years & nothing has changed.

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I had my first meeting with my UW Endocrinologist today. All went well until she said she wanted to put me on Reclast to start with & I shared my feelimgs about that, so it was dropped. We ended with a recommendation for Prolia which I felt ok with. The problem with Prolia's failure to prevent bad bone loss upon discontinuing would be addressed by simply staying on it since I am 86.

Thoughts?

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