Boniva Pro’s and Con’s

Posted by pgn @pgn, Sep 2 9:56am

Have not tolerated other biophosphates prescribed for moderate osteoporosis. Severe cramping and bone pain after starting.
Decision made to begin Boniva a once a month treatment. Looking for experiences both pro and con just to get an idea. Thank you!

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Profile picture for gently @gently

osteop60yay, can I assume that you are not seeing an endocrinologist.
Most of our endocrinologists are advising that we take a bone building medication before taking the medications that slow down bone loss.
Your numbers are definitely lower on Dexa if you are small boned. But, you do likely have osteopenia and at at an opportune moment to increase your bone strength and density. More than half of all frailty fractures happen to women who have osteopenia.
I don't have a medical background but I don't think someone should take a medication that makes them sick, if there is a better medication that might not make them sick. Forteo might be a much better medication for you. It certainly builds more fracture resistant bones. Your doctor shouldn't be unhappy, but they make me laugh.
Maybe you should be mad at the doctor for prescribing a drug that makes you ache, makes you fatigued bloated, foggy and thirsty. Demand a better drug, maybe.
Osteoporosis is tricky, though. We all feel fine until we fracture, then we're miserable forever.

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@gently

Fabulous response..."Maybe you should be mad at your doctor..."

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Profile picture for gravity3 @gravity3

Medication sequencing is very important when starting these drugs.
Here is a paper that might assist you.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10118820/
Of course every patient is unique. What research have you already done? May I ask your age and dexa scores?
Do you take bhrt/hrt with testosterone? Have you been tested for secondary causes of bone loss or has it been determined that loss of hormones is the culprit (most cases are menopause related).

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@gravity3 thank you for sharing this was a good review article.

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Profile picture for osteop60yay @osteop60yay

I started the once a month Boniva 7 days ago and have not had the horrible knee cramping that I had on the initial weekly prescription. Yay! However, my joints ache, my back aches to the point that I am taking Tylenol in small doses when I can't tolerate it. I am bloated in my face, neck, and stomach, and am having difficulty with feeling fatigued and in a fog like I had not felt in ten years at 50. I slept most of today because of it. I also am excessively thirsty. I really hate taking it and wonder if it is worth it because I felt fine before I was diagnosed at just -2.5 spinal, -2 hips. My doctor was not happy that I stopped the one week Boniva treatment after two months of nightly knee cramps. So, I am actually scared to stop this because of her. But, I am wondering if the studies are accurate for smaller women like me and if it is really necessary at my current age of 60? I was not given a hormone replacement therapy option; however, I would be open to anything that works without such side effects.

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@osteop60yay I am growing to believe that there are many women feeling the same way. I also felt the frustration of my rheumatologist when I told her I discontinued the once a week osteoporosis med because it too caused serious muscle cramping and bone pain. My numbers are relatively low, yet my doc is adamant about my starting Boniva now. I say this because she also told me, after stating I was very unsure about needing the medication now (no change in over 2 years), she said “you don’t have to take anything” It’s up to you.
It’’s just extremely difficult to intentionally take medication that causes you to feel unwell.

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Profile picture for boneoptimist @boneoptimist

@gravity3


Try this again please

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@boneoptimist wonderful video. But, it does take a minute to take it all in and understand it and how it may or may not apply to your specific circumstances. Thanks for posting

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Profile picture for pgn @pgn

@osteop60yay I am growing to believe that there are many women feeling the same way. I also felt the frustration of my rheumatologist when I told her I discontinued the once a week osteoporosis med because it too caused serious muscle cramping and bone pain. My numbers are relatively low, yet my doc is adamant about my starting Boniva now. I say this because she also told me, after stating I was very unsure about needing the medication now (no change in over 2 years), she said “you don’t have to take anything” It’s up to you.
It’’s just extremely difficult to intentionally take medication that causes you to feel unwell.

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@pgn

Do you have an endocrinologist in your area that works with osteoporosis? I wonder if you need a second opinion.

If you do continue bone meds at some point, this is a question I have had to ask myself:
Is it reasonable to expect some level of discomfort and/or pain when we are asking these meds to do the heavy lifting of changing our bones ?

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I’d like to look into that actually. Good idea. I take thyroid meds and I’m sure there’s more than a small connection.

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Profile picture for pgn @pgn

I’d like to look into that actually. Good idea. I take thyroid meds and I’m sure there’s more than a small connection.

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@pgn , I too have taken thyroid meds for over 20 years, and yes, they cause bone loss. 🙁

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Profile picture for boneoptimist @boneoptimist

@pgn , I too have taken thyroid meds for over 20 years, and yes, they cause bone loss. 🙁

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@boneoptimist
What type of thyroid meds? Prescription or Armour or NP which are natural?

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I’ve taken 100 mg of thyroxine, which is generic for Synthroid since I was 19. I’m a ripe old 76 now. I went off at in my early 20s during my first pregnancy and as soon as my daughter was born, I developed a pretty large goiter! I was put back on the medicine right away and it corrected the problem. I’ve had nuclear scans and all of that and I’m checked every year for the problem. But now I’m beginning to wonder if according to some of the things I’ve been reading, I might be able to wean off of this drug. Not by myself! Would never do that! But may talk with my GP about that.

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Profile picture for donnabutcher @donnabutcher

@boneoptimist
What type of thyroid meds? Prescription or Armour or NP which are natural?

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@donnabutcher , I take Levothyroxine. Dr just had me try ( last few months) going from 50mcg every day to 3 days/week at 25 mcg. Blood work was okay, so now I'm trying 25 mcg/day everyday. We will check thyroid levels in 6 weeks to see if I can stay at the lower dose.

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