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CTX Testing Question

Osteoporosis & Bone Health | Last Active: Jul 25 6:50pm | Replies (29)

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@beanieone

Both my previous and current doc felt that Prolia was the first line of defense in the OP battle after Tymlos and Evenity @windyshores. I don’t like the idea that Prolia only stunts the growth of osteoclasts and stopping the drug causes those mad little buggers to come roaring back in large fashion and breaking down bone at an even faster rate. That and the idea that I’ll need to have the meds every six months f-o-r-e-v-e-r (or until another “wonder drug” comes along”) was making me unhappy. By the way, my previous doc pretty much told me I’d be taking Prolia, or maybe Reclast . . . without offering any explanation as to the what’s, why’s and wherfore’s.

I finally found a doc who takes my opinion into consideration and that’s a win for me. He listened to my Prolia objections carefully, did his due diligence - spoke to colleagues, lab work, x-rays . . . and based on every bit of knowledge he can summon, including my past reactions to Reclast, agreed to one (or possibly two) infusions to see how things go; I had the last infusion 2021 so I’ve had a drug holiday of about 3-1/2 years.

Let’s face it, we are in uncharted territory here friends, trying to navigate with a broken compass to get safely to the leeward side of OP.

Have a great week, y’all. Cheers!

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Replies to "Both my previous and current doc felt that Prolia was the first line of defense in..."

@beanieone so just to be clear, you did Reclast infusions and then did a drug holiday for 3 1/2 years? How many infusions did you do? I am asking because I did the same meds you did and have done one partial infusion of Reclast and wonder what the future holds.

My back hurts a lot at this moment from all my spinal fractures and I don't want any more!

I feel like we are flying a plane in the dark without an instrument panel, and so are the doctors, about long term plans for osteoporosis.

I read that they originally thought Fosamax was the life long wonder drug until people started breaking their femurs. I also remember reading and being told (even by more alternative sources) that Prolia was the new miracle drug, then there were issues with rebound. Now we have Evenity and it is scary in a lot of ways, since it has been around since 2019. Videos and books cover a few years of treatment but what about the next 20 years? I respect my doctor for saying "there is still so much we don't know." It's good we have doctors we trust.