Success with Prolia?

My lumbar t-scores

July 2019, age 50, -3.9
July 2021, age 52, -3.7
December 2022, age 53, -3.6

I also have Hashimoto's thyroiditis which caused hypothyroidism. Was diagnosed with this in 2017, age 48, and I take 75 mcg of levothyroxine daily for this.

For my osteoporosis, at my endocrinologist's recommendation, I took alendronate from January 2020 to July 2021, and quit taking it because it was causing digestive tract issues. Then my endocrinologist pushed me to have a zoledronic acid infusion, he told me my bones were "horrible" and not knowing what else to do, I had the infusion in November 2021.

After having the infusion, I started doing my own research and discovered that my endocrinologist wasn't doing what he should have done. He hadn't ordered any tests to rule out secondary causes and he had never even looked at my full DEXA reports. All he was basing his decisions on was my DEXA summaries.

When I finally got my hands on my complete DEXA reports from July 2019 and July 2021, I discovered that the "big gain" in my left hip was really a big gain, it appears to be an error in my July 2019 report that made my left hip look worse than it actually was.

My endocrinologist expected me to have another zoledronic acid infusion this past November, but I have put it off. I need to find a doctor who can actually tell me what my bone turnover marker tests mean before I take any more osteoporosis meds. All the reading I have done on this topic is making me think that my hypothyroidism is what is effecting my bones.

I have been on Prolia for 6-7 years and have never had an issue. I get the shot every 6 months in my thigh and off I go. Every 2 years they do a bone density test and my spine and hips had been improving. I just had another bone density in December and my hips seemed to be regressing so I see the doctor at the end of this month and not sure what he is going to do.

My doctor only discussed Prolia which she recommended for 5 yrs and then zolendronate 1 dose would be given 6 months after stopping Prolia. I am, however, interested in knowing more about Evenity. Because it is so recently on the market, it is hard to get results from people who have completed the 12 month treatment. Thank you for your perspective.

I am a 66 year old female. In 2015, I slipped and fell on ice and cracked a vertebrae in my back (L-1). Prior to the accident, I was on omeprazole for over 10 years, and always told to take it once a day. Then it was twice a day. Never was I told to only take it for 2 weeks and then give it a rest for 2 weeks. Perhaps you all know that a side effect of omeprazole is brittle bones! After the accident, I was still taking omeprazole but now I was put on phosomax. Oh my, that felt like the flu on steroids for me. I was switched to Prolia (1 shot 2 x a year) and I took it for 7 years. I had wonderful results! No adverse side effects and my dexa scans were great! I was even out of osteopenia! So good, UNTIL … Reclast. The recommended treatment after success with Prolia is to have a Reclast infusion and go on a ‘drug holiday’ for two years. No osteoporosis meds for 2 years! But, after having the Reclast infusion, Fri., Jan. 13, 2023, my body reacted to it worse than with phosomax. At first it seemed like a minor discomfort, and then I woke up Saturday with debilitating pain in all my joints—worse than the flu, worse than COVID, and worse than the phosomax side effects. I called my rheumatologist and was told to just take Tylenol and Advil. Today is Mon., Jan. 16, 2023, and I am on my way to the ER. I have to use crutches to walk b/c my right knee feels like it is going to explode. Literally. I cannot bend it and the pain is excruciating and is not letting up.
So, to sum up, from my experiences, take omeprazole with caution, get Prolia shots twice a year, NEVER get Reclast, and stay healthy!

Greetings @louise2023, welcome to Connect and a brand new year. I think it is a good time to join our forum. Our mission is one of sharing. Knowledge is power and one of the ways we can increase our personal knowledge is by learning from others. At the age of 80, I am also amazed at the number of folks who have side effects exactly the opposite of someone else after taking the same medication. Our clinicians are also challenged to learn as much as possible about our experiences and tolerances. And then of course there are the results of tests like DEXA scan.

Have you had a chance to ask your doctor/clinician why Prolia has been chosen for you? Perhaps you have some condition like an allergic reaction to bisphosphonates. Or perhaps you take another medication that might not work well with other options.

Have you read about Prolia on the website? All known side effects should be updated and printed there or on their prescribing dosage insert. You can also call the company, Amgen, and talk with a medical professional about your situation. That number is 800-772 6436.

I see you are on a drug holiday from Alendronate. I don't think that will be possible with Prolia. However, please ask one of the folks at Amgen. You don't want to have any fractures.

I don't know what your current bone status might be. Have your scan scores been stable? And just in case you might want to know......Evenity, which is the newest bone builder as well as a bone protector appears to be a 12-month option for some patients if they need more strength. Evenity is also an Amgen product.

You know......everyone is slightly different in how their bodies handle medications. So it is hard to "cut to the chase" so to speak.

Please tell us a little more. Thanks,
Chris

I had my first injection of Prolia at the end of August 2022. I had serious reservations, but my orthopedic doctor said any pharmaceutical has a list of side effects that would scare the pants off you, yet very few people ever experience the bad side effects. Two things she didn't say was that Prolia is an immuno-suppressant and the other is that I will have to take it for the rest of my life. After I got the shot, she talked about the length of time I would be taking it and she stopped about 85 years old, which means she estimates I will only live another 17 years. I have been having fungal infections for the first time in my life that I cannot seem to get rid of. I don't want anymore pharmaceuticals, ever. I want to stop Prolia. I will see an endocrinologist as soon as I can get a referral to determine the best way to stop. I also have some dental problems that started after the shot, coincidence? I am very disheartened at this point and feel I've been lied to by all concerned.

Good evening @greyfox914,
I can understand why you are disheartened. I faced the same situation. I started Prolia after two years on Tymlos because I was not given any other options. I did not have it easy with pain in my gums and jaws.

Like you, I am not fond of any pharmaceuticals and stay away from OTC medications. I ended up with help from my new endocrinologist at Mayo Clinic to help me through the process of letting go of Prolia. I actually started the new medication on what would have been the second year of Prolia. So far....no side effects in the ensuing six months.

The fear of fractures just worried me no end. However, it's a new year and I am feeling more hopeful.

When is your endocrinology appointment?

May you be safe, free, and protected from inner and outer harm.
Chris

Good evening @greyfox914,
I can understand why you are disheartened. I faced the same situation. I started Prolia after two years on Tymlos because I was not given any other options. I did not have it easy with pain in my gums and jaws.

Like you, I am not fond of any pharmaceuticals and stay away from OTC medications. I ended up with help from my new endocrinologist at Mayo Clinic to help me through the process of letting go of Prolia. I actually started the new medication on what would have been the second year of Prolia. So far....no side effects in the ensuing six months.

The fear of fractures just worried me no end. However, it's a new year and I am feeling more hopeful.

When is your endocrinology appointment?

May you be safe, free, and protected from inner and outer harm.
Chris