Tymlos for two years and then Prolia - what are your experiences?

Posted by mmodestti @mmodestti, Apr 5, 2023

My osteoporosis has gotten out of hand. In February 2022, I suffered five compression fractures (L1-L-5) and in November, three more (T-10- T-12). Each time I spent 10 to 12 weeks in excruciating pain.
My endocrinologist has suggested starting me on Tymlos for 2 years, and then moving on to Prolia. Has anybody used this medication (Tymlos)? How was your experience?

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@pmd25

I was just diagnosed with Osteoporosis in my spine... T score -2.5 and I am terrified. My PCP want me to start Prolia. I have done a bit of research, and the side effects sound terrible!
I have been reading about prunes!
"Prunes have been shown to increase the markers of bone formation. They also appear to down regulate the inflammatory bone breakdown factor known as RANKL. Inhibiting RANKL or its receptor, RANK, reduces bone resorption. This is the same mechanism of action of the popular osteoporosis drug Prolia d e n o s u m a b."

Please tell me why others here are against this drug? I NEED MORE INFO!! BTW, I am 70. Thank you!

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Hello @pmd25. I too was terrified when I was diagnosed with -2.6. The first drug offered to me was also Prolia, which when I began researching led me to Mayo Connect. I declined the drug, (and was declined by my insurance anyway), and so began my deep dive into OP...
There is a lot to learn here, and you have time and options; no need to jump at the first drug, or any drug necessarily, with your low numbers. There is a vast amount of information here to help you. You can search by topic and will find info about drugs, root causes, testing, exercise, nutrition and yes prunes.
Many of us are trying to maintain our bone with HRT. Lots about that here as well.
Take your time and get informed. The worry will dissipate, things will feel less scary! Wishing you all the best!!

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@sonodeka

Hello @pmd25. I too was terrified when I was diagnosed with -2.6. The first drug offered to me was also Prolia, which when I began researching led me to Mayo Connect. I declined the drug, (and was declined by my insurance anyway), and so began my deep dive into OP...
There is a lot to learn here, and you have time and options; no need to jump at the first drug, or any drug necessarily, with your low numbers. There is a vast amount of information here to help you. You can search by topic and will find info about drugs, root causes, testing, exercise, nutrition and yes prunes.
Many of us are trying to maintain our bone with HRT. Lots about that here as well.
Take your time and get informed. The worry will dissipate, things will feel less scary! Wishing you all the best!!

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You are wonderful. Thank you so much for this response. I'm just looking at it this morning and I feel a little less terrified after reading your words. I will do a deep dive as well. Right now I'm going to have coffee. Thank you thank you thank you so much ! ❤

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@pmd25

You are wonderful. Thank you so much for this response. I'm just looking at it this morning and I feel a little less terrified after reading your words. I will do a deep dive as well. Right now I'm going to have coffee. Thank you thank you thank you so much ! ❤

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Enjoy your coffee and your morning! And your deep dive!
Strangely enough this diagnosis can lead to a lot of healthy life changes with the focus on a high quality and protein rich diet and lots of safe exercising. You might want to check out the Cronometer app to monitor your diet, and some online videos for safe exercise like from Margaret Martin or Brickhouse Bones on YouTube.
Post your questions and progress!
Enjoy your life!! 💜

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@kathleenintexas

I was diagnosed in 2000 with a T-score somewhere around -3.5. I tried diet and exercise and supplementation and gave up having DEXA scans each year, because I was determined not to use medication, so why bother? Fast forward to 2021 when I slipped on the ice resulting in a spinal fracture. X-rays showed multiple older fractures, which shocked me. The doctor said they could be silent and painless. The DEXA scan showed -4.5 for my spine. I embarked on rigid diet and exercise regimens and the next one was -4.7. So, I flew from Texas to Massachusetts to consult with Dr. Keith McCormick, who was diagnosed with severe osteoporosis at age 45 despite being an Olympic-qualifying athlete. His book 'The Whole Body Approach to Osteoporosis' is a must-read for those of us with the condition. Also, 'Rebuild Your Bones' by Mira and Jayson Calton is excellent for learning what foods help and what foods hamper bone-building. The first thing Dr. McCormick said to me was that I had no choice but to go on medication. After 22 years I gave trying to do without it. Before starting Tymlos I got a baseline DEXA and it was -5.1. My local doctor works with Dr. McCormick by ordering the blood tests for bio markers, which tell Dr. M how I'm doing. He also checks for gluten problems. I recommend to everyone not to try to guess what to do next. And I've seen endocrinologists that did nothing. You need an expert in the condition. Dr. McCormick does phone consultations.

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So what results have you seen since you began Tymlos and when did you start?

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@rjd

So what results have you seen since you began Tymlos and when did you start?

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@rjd , you are responding to a post that is nine months old, so I'm not sure that person will even see it. My experience with Tymlos has been great. I've been on it for almost a year, and gained 15% bone density in my spine. My overall T-score went from -3.0 to -2.0, which is osteopenia instead of osteoporosis. I plan to stay on it for another six months, at which time my doctor and I will discuss next steps (either six more months, or start Reclast or Fosamax.)

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@pmd25

I was just diagnosed with Osteoporosis in my spine... T score -2.5 and I am terrified. My PCP want me to start Prolia. I have done a bit of research, and the side effects sound terrible!
I have been reading about prunes!
"Prunes have been shown to increase the markers of bone formation. They also appear to down regulate the inflammatory bone breakdown factor known as RANKL. Inhibiting RANKL or its receptor, RANK, reduces bone resorption. This is the same mechanism of action of the popular osteoporosis drug Prolia d e n o s u m a b."

Please tell me why others here are against this drug? I NEED MORE INFO!! BTW, I am 70. Thank you!

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So after 1 year of Evenity my endocrinologist decided based on new studies that she wanted me to take Prolia for 3 injections to build more bone density. My DEXA showed that my spine in now -3.3 from -4.6. I have had 2 doses so far and no side effects. I will then take reclast to lock my gains in. I have another DEXA in August.
When my T score in my spine was lower -2.5 in my 60’s I thought it could be managed by exercising, and supplementing. Unfortunately that did not turn out for me. There are some people whom it has worked for.
Read Great Bones by Keith McCormick and I also like Doug Lucas MD who is on YouTube.

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@njx58

@rjd , you are responding to a post that is nine months old, so I'm not sure that person will even see it. My experience with Tymlos has been great. I've been on it for almost a year, and gained 15% bone density in my spine. My overall T-score went from -3.0 to -2.0, which is osteopenia instead of osteoporosis. I plan to stay on it for another six months, at which time my doctor and I will discuss next steps (either six more months, or start Reclast or Fosamax.)

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Good to hear you had excellent results on Tymlos, as many people do but I gather perhaps not everyone.

I asked a question of this poster because of her detailed history in responding to OP without meds and then her subsequent consultation with McCormick. She should have some results to share by this time, if she is willing to do so.

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