1. < Osteoporosis & Bone Health

Treating Osteoporosis: What works for you?

Posted by heritage1955 @heritage1955, Apr 1, 2016

Hi. I'm new to the site and am interested in treating osteoperosis. I'm 39 yo and recently had a bone density that showed I'm at -2.4. So, going through the intial "I can't believe it" stuff. 🙂

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

windyshores | @windyshores | Jul 19, 2022
In reply to @artscaping "Hi there @windyshores, unfortunately, insurance did not cover Tymlos significantly.......at least not as you received. I..." + (show)
@artscaping

Hi there @windyshores, unfortunately, insurance did not cover Tymlos significantly.......at least not as you received. I think it ended up averaging about $200-$300 a month. Also, there was no wrist fracture.....it just didn't score well. I have titanium boxes in my cervical spine so....Dexa scans cannot be done there.

I sure was surprised to hear the comments from my Mayo endocrinologist about not having significant enough evidence to begin medication. However, being positive.......we just move forward.
Thanks for your response.
Chris

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@artscaping if I had depended on insurance, my cost for Tymlos would have been similar to yours. I qualified for Radius Assistance and have 18 months of Tymlos at no cost. I encourage anyone to contact Together with Tymlos for a personal rep to help you access this help.

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windyshores | @windyshores | Jul 19, 2022
In reply to @joan26 "Where to begin! Either from being on Prolia or going off briefly ( when bone specialist..." + (show)
@joan26

Where to begin! Either from being on Prolia or going off briefly ( when bone specialist said I needed a "drug vacation" ) leading to several broken vertebrae pretty much ending my active, pain free life, and also leaving me with skin eruptions, macular degeneration of retina threatening blindness (which one retina specialist said because I was on Prolia and another retina specialist said was because I had osteoporosis, so go figure!) The only blessing is my advanced age so nature will put me out of this misery fairly soon. (That said, constant pain and immobility was definitely NOT my retirement plan!) How do I deal with this? By having enough money to hire help to do chores I used to manage easily, take taxi cabs because I can no longer drive (although not having a car does save money), by crying a lot, and by sharing my experience with others!

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@joan26 I can relate, with 7 spinal fractures. People don't realize how much pain and disability can result, as well as a loss of independence. I wonder if you have done or are doing any bone-building drugs like Tymlos, Forteo or Evenity.

I cannot do much but my daughter is visiting and noticing I am a little stronger than last year right after 4 of the fractures. Meaning, I can lift a little more. (I don't mention the pain.) I am on Tymlos.

I am lucky- I can drive. In fact the support of my car seat actually helps. Loss of driving would be tough since walking while carrying is hard.

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1 reply
ceciliamarypatriciafrancis | @ceciliamarypatriciafrancis | Jul 19, 2022
In reply to @toni7 "I have a question ... What are some side effects that you or someone you know..." + (show)
@toni7

I have a question ... What are some side effects that you or someone you know have experienced taking Prolia, Tymlos or Forteo? If you have had side effects, what are they and how did you deal with them? I'm more comfortable knowing firsthand what people (rather than clinical studies) deal with taking these drugs.
Thank you for your response!

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My one and only Prolia injection left me with an unusual side effect...within days I no longer was able to taste anything properly. I didn't lose my sense of taste; there was just a strange overlying taste. Coffee was especially foul. I refused to take any more Prolia and went back to Actonal. Belatedly reading this site, I saw so many scary side effects. In hundreds of posts, I saw only two about taste, one person described it as "burnt mouth".

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1 reply
toni7 | @toni7 | Jul 19, 2022
In reply to @johnbishop "Hi @toni7, There are a few discussions on the side effects you might find helpful: --..." + (show)
@johnbishop

Hi @toni7, There are a few discussions on the side effects you might find helpful:

-- Side Effects of Prolia: https://connect.mayoclinic.org/discussion/side-effects-of-prolia/
-- Tymlos side effects: https://connect.mayoclinic.org/discussion/tymlos-side-effects/
-- Forteo vs. Tymlos: https://connect.mayoclinic.org/discussion/forteo-vs-tymlos-1/

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Thank you for you input. I have been reading about these drugs for years. I do know what the clinical studies side effects are. I am more concerned about the side effects that people taking these drugs are dealing with. Whether they are positive or negative, I'd like to hear from anyone dealing with osteoporosis and what treatments they are taking (pharmaceutical, holistic, nutritional, etc.)

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toni7 | @toni7 | Jul 19, 2022
In reply to @joan26 "Where to begin! Either from being on Prolia or going off briefly ( when bone specialist..." + (show)
@joan26

Where to begin! Either from being on Prolia or going off briefly ( when bone specialist said I needed a "drug vacation" ) leading to several broken vertebrae pretty much ending my active, pain free life, and also leaving me with skin eruptions, macular degeneration of retina threatening blindness (which one retina specialist said because I was on Prolia and another retina specialist said was because I had osteoporosis, so go figure!) The only blessing is my advanced age so nature will put me out of this misery fairly soon. (That said, constant pain and immobility was definitely NOT my retirement plan!) How do I deal with this? By having enough money to hire help to do chores I used to manage easily, take taxi cabs because I can no longer drive (although not having a car does save money), by crying a lot, and by sharing my experience with others!

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I am so sorry to hear of your ordeal dealing with this horrible disease. It's unfortunate that better treatments with less horrific side effects aren't available for us. Thank you for your response and may your Higher Power guide and protect you.

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toni7 | @toni7 | Jul 19, 2022
In reply to @ceciliamarypatriciafrancis "My one and only Prolia injection left me with an unusual side effect...within days I no..." + (show)
@ceciliamarypatriciafrancis

My one and only Prolia injection left me with an unusual side effect...within days I no longer was able to taste anything properly. I didn't lose my sense of taste; there was just a strange overlying taste. Coffee was especially foul. I refused to take any more Prolia and went back to Actonal. Belatedly reading this site, I saw so many scary side effects. In hundreds of posts, I saw only two about taste, one person described it as "burnt mouth".

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Did you have any side effects from Actonal?
Thank you

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1 reply
ceciliamarypatriciafrancis | @ceciliamarypatriciafrancis | Jul 19, 2022
In reply to @toni7 "Did you have any side effects from Actonal? Thank you" + (show)
@toni7

Did you have any side effects from Actonal?
Thank you

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No, fortunately I was lucky with that - my only complaint was the $90 monthly co-pay. In retrospect it's a little scary having to take something with 8 or more ounces of water before eating and staying vertical for 30 minutes...why? I'm very obedient with doctors since I live in Yale land and have excellent providers. I've mentioned before that I recently finished a year-long expensive course of Evenity with great success, so I do what I'm told for the most part. I have had to go back on Actonel again, though to keep up the good work, so it never seems to end.

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bruceandruth1970 | @bruceandruth1970 | Jul 20, 2022
In reply to @toni7 "I have a question ... What are some side effects that you or someone you know..." + (show)
@toni7

I have a question ... What are some side effects that you or someone you know have experienced taking Prolia, Tymlos or Forteo? If you have had side effects, what are they and how did you deal with them? I'm more comfortable knowing firsthand what people (rather than clinical studies) deal with taking these drugs.
Thank you for your response!

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I had severe pain in my thigh after taking prolia for three years. It felt like I was trying to walk on a broken leg. It also caused bone loss in my jawbone, so I’m unable to have an implant.

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1 reply
toni7 | @toni7 | Jul 20, 2022
In reply to @egrolman "I’d like to put in a good word for Forteo, as I’m just now finishing up..." + (show)
@egrolman

I’d like to put in a good word for Forteo, as I’m just now finishing up my 2nd year with zero side effects. Never had a single problem with it beyond overcoming my early squeamishness about injecting myself. Have my DEXA next week and hoping for good things!

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Good morning,
I've heard mention that Forteo has minimal side effects. Has your doctor mentioned what treatment will be following Forteo?

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1 reply
egrolman | @egrolman | Jul 20, 2022
In reply to @toni7 "Good morning, I've heard mention that Forteo has minimal side effects. Has your doctor mentioned what..." + (show)
@toni7

Good morning,
I've heard mention that Forteo has minimal side effects. Has your doctor mentioned what treatment will be following Forteo?

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Good question. I have that appointment with my doc next Monday after lab work and DEXA scan. I’ve read recently that the current thinking indicates you can stay on Forteo more than two years so if that’s possible, I’ll certainly consider that.

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