Success with Prolia?

Good evening @thehuth6,

Hi there, yes, I am happy to share with you the choice that my Mayo endocrinologist made for me. I started it on the one-year anniversary of my first Prolia injection.

My endocrinologist chose Alendronate because of the following reasons:
1. A weekly pill is a lot lower dose than an every 6 month injection. My body handled Tymlos because it was daily. My body just can't handle long half-life meds and Prolia was every 6 mos.
He chose Alendronate because it had a weekly lower dose than the twice-yearly Prolia.
2. Also, with short-term use, the medication is able to keep the bone density stable.
3. I also had a dental surgeon review my x-rays to make sure there was no evidence of osteonecrosis of the jaw from the one year on Prolia so I was transitioning at a good time.

Is there anything else I can share with you?

May you have happiness and the causes of happiness.
Chris

Thank you for responding with a thoughtful reply.
The earliest I could get an endocrinologist appointment is February 16, and am supposed to have my second shot February 28. I'm expecting a full-court press to continue with Prolia because I am at high risk according to my orthopedic. I know that I am easily persuaded and may have trusted the orthopedic more than I should have. I recall her saying that I couldn't get another bone scan until August 2023, but she "guessed" my T score would be around -3.7. My previous confirmed score was -3.4 in August 20, 2021. Even with all the bone building exercises, extra calcium, vitamin D and other supplements to strengthen my body, I believed her and took the first Prolia shot! So I'm angry with myself which is not helpful, but I need a way out. What is the alternate medication that you were given?

My endocrinologist wanted to start me on bisphosphonates because bisphosphonates have been around longer than anabolics. His plan was that I would use bisphosphonates for a couple of years then stop treatment and by the time I needed to take another osteo-med there would be more data on how anabolics (and their long term side effects etc) and as he put it "who knows what else will be available in the future." From that comment, sound like he's hoping for a miracle cure LOL.

After following my endoncrinologist's advice and taking bisphosphonates, I read that anabolics are not as effective if taken after bisphosphonates. I'm hoping that this means if taken immediately after, because it seems ridiculous to put someone on bisphosphonates only to lessen the effects of the next med they might have to take.

Another thing I should mention is that my orthopedist said that many people don't take osteo-meds until they start fracturing. Additionally, I'm it seems there are a good number of ppl with bones that T-SCORE-wise are better than my but who are fracturing when I am not.

Right after have my first (and only) zoledronic acid infusion, I started doing my own research. I was trying to find out how I could sort of force my body to absorb more calcium. What ever I entered into the search bar lead me to info on the parathyroid glands and eventually I found Dr. Brown's BetterBones.com and found her list of tests you should have for secondary causes of osteoporosis. One of the tests listed was a PTH test. During my next endocrinologist visit I asked my endocrinologist appt I asked him about having it tested and he always starts with a stupid scare-tactic of "your insurance may not cover this" and then he had his lab person draw blood for a PTH test. I had had my zoledronic acid infusion, which he ordered, approximately 6 weeks prior. So yes, he checked my PTH but what I learned later is that bisphosphonates can skew PTH results and that you are supposed to do if fasting and first thing in the morning. So the test showed that my PTH was in the normal range but the test wasn't performed correctly. Now that it's been over a year since I had the infusion, I could request to have my parathyroid glands tested again. I have an appt with an telemedicine doctor next week to try to get help understanding my bone turnover marker tests and during that appt I will see what the she thinks I should do.

I have read all these comments on Prolia and am confused as ever. My question is most of the posts are from people who have seen Endocrinologists. I have only seen Rheumatologists for my severe Osteoporosis. Am I seeing the wrong specialist? I haven't been to a MD in 6 years for my Osteoporosis and have not had a fracture. My newest Rheumatologist wanted to put me on Evenity which I declined after reading about all the horrible side effects. Now he wants to put me on Prolia which I was on after taking Forteo for 2 years. I had no change in my DEXA scan results with either medication. I would appreciate anyone commenting on my post.
Thank you

When it comes to management of these strong drugs I’d recommend an endocrinologist.

@pedsnurse61 in most cases a rheumatologist can be fine, or find an endo who specializes. In your situation I would consider Evenity rather than Prolia.

@fearfracture Forteo has been around quite a long time, long enough to have the black box warning and two year limit lifted. Tymlos is similar in action but newer. Evenity very new. I hope you can take an anabolic!

Good evening @greyfox914........I answered your question right below this message. I just forgot to add your name. Sorry....let me know if you can't find it or have questions.
Chris

Thank you for your response. I decided not to go on Evenity, way too risky. I made an appointment with an Endocrinologist to get her opinion on my situation. Wish me luck.