Dear JK, Wow, what a journey you've been on. Understatement! My heart is heavy reading your story.

I too take daily Prednisone and then before that IV steroids with PO tapers, for lungs and connective tissue disease inflammation. I hate the drug. It has caused cataracs, fractures (osteoporosis) and other health problems.

My Endos over the years have wanted me to take osteoporosis meds but after much research and many consults, I can't allow myself to take any of the toxic drugs.

I can't imagine being in more pain than I am already in. The side effects can be brutal and described as "debilitating severe" muscle and joint pain, flu-like symptoms, stomach upset and even Femur fractures and a femur tumor although rare. And, if I am understanding it correctly, none of them do the two things we need, which is removing of the old dead bone and rebuilding new bone. They either do one or the other. And some of them you can only take for so long and then because they are so toxic you need a vacation from them for a certain amount of time.

I do not mean to discourage you in any way. This has been very recent with me and I have the best endocrinologist in the world who has been willing to discuss every potential issue over and over again with me.

Each must make their own decision for what is best for themselves. I was so shocked to learn that my recent bone density study showed my spine is 13% worse and my hip 14% worse and they say that anything greater than 2% change is considered significant. I already had severe osteoporosis and had three broken pelvic bones one broken rib and a few smaller.

I had lost a bunch of weight on a very low calorie diet which really hurt me and I didn't realize it for a few years. Now I have changed my diet and added the things that you mentioned you take in regard to supplements. I learned that I must have fat with the meal for the Vitamin D that I take with a meal to do its work helping absorb calcium. I have a wonderful nutritionist now who has taught me so much! I have changed the plant-based bone supplement I was using because it had strontium in it. I have learned that strontium is a very heavy Adam and if it is taken with calcium your body will absorb the strontium and not the calcium. Therefore, the strontium should be Taken 2 hours before or after calcium or calcium supplements.

So much of what I have learned is here on connect. There is so much to learn about this horrible disease!

I will uphold you in prayer that God gives you discernment in which direction to go regarding your osteoporosis medications. I will also be praying that your decreased dose of prednisone does not in any way cause you problems with your transplant. I do not know what your transplant is but I assume you are taking it for anti-rejection?

Take good care of yourself, it sounds like you are and many blessings and warmest wishes, Sunny flower 😊🙏

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