Treating Osteoporosis: What works for you?

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.

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.)

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".

@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.

@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.

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!

Hi @patsc, I don't have any information for my wrists. I protect them actually when I am doing floor exercises. and yoga stretches. The most concerning scores were the osteopenia ones which stayed nearly the same after two years of T ymlos. It is apparent that I didn't need to start medication at that time. Now I am taking weekly alendronate which makes it possible for me to continue protecting my bones after the two years of Tymlos.

These medications and procedures can be complex. I try to do my best and work on improving by strength and stability so I don't fall. I have a wonderful therapist at Mayo who selects Otago type exercises for me. We check in by video. I perform and she adds new exercises. It is working very, very well. I consider myself a lucky gal.

May you have happiness and the causes of happiness.
Chris

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!

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/

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!