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?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

I have decided to delay any treatment until/unless I find a doctor who does not take the one-size-fits-all approach. The average American woman now is 5'4" and weighs 160 pounds. I am 4'11" and weigh 100 pounds. What is right for the average woman may be almost toxic for me.

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@normahorn

I have decided to delay any treatment until/unless I find a doctor who does not take the one-size-fits-all approach. The average American woman now is 5'4" and weighs 160 pounds. I am 4'11" and weigh 100 pounds. What is right for the average woman may be almost toxic for me.

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I agree. I am 5’ 2” and weigh 100. I have always been hyper sensitive to drugs. Am not willing to take anything now. What did u decide?

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@judy58

I agree. I am 5’ 2” and weigh 100. I have always been hyper sensitive to drugs. Am not willing to take anything now. What did u decide?

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Algea Cal

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No dentist will see me because I have bone loss and periodontal disease, so they won't touch my teeth if I am on a osteoporosis med. I am on Algea Cal and have no problem with that. Last bone density test showed no improvement in hips but 25% improvement in back. (spine) I thinks that's pretty awesome.

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@sixer

didgi2175
My husband was diagnosed with osteoporosis a couple of years ago, after two broken hips, and rods put in his back supporting four broken discs, and a broken wrist. He is not on medication and the doctors haven’t mentioned that he should be. Should he be?

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I have two broken hips and I have scheduled a discussion with my primary about whether I should be on any meds

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@lovinjesus

No dentist will see me because I have bone loss and periodontal disease, so they won't touch my teeth if I am on a osteoporosis med. I am on Algea Cal and have no problem with that. Last bone density test showed no improvement in hips but 25% improvement in back. (spine) I thinks that's pretty awesome.

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Hi love Jesus
That is awesome news with Algae Cal. I have started A cal plus for about 3 weeks now.
Question if u don’t mind. Are u taking Algae Cal plus and also the separate Strontium? Or Algae Cal alone? How long have u been taking it? And is this the only thing u take to treat your osteoporosis?
I recently diagnosed and super freaked to try anything but this and Dr Doug Lucas diet regime which has been awesome and big change for me. I have added walking hills flat and stairs, lite weights.

Thank you,Karen

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@maureenanne

I tried for years to manage my osteoporosis with diet, supplements and exercise. Bones just got worse and worse. I have broken both hips and fracture in lumbar spine. I couldn't figure it out, until 3 weeks ago when I was diagnosed with advanced stage celiac disease. I was absorbing nothing! Got my first prolia shot yesterday and so far, so good!

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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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@hsum4

I have been on Prolia for about 8 years. I'm 71 and I've had very little side effects. I also exercise moderately and walk about 5 days a week for about 35 to 40 minutes each time. I do have low body weight and I'm struggling to gain weight. That's my story so far.

hsum

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hsum, have have your bone numbers done over that time?

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@kristie2

Hi,
We are taking the same supplements and I take a few more. I was happy to hear that you have completed your course of Evenity. What scares me is what if I need dental work such as a root canal etc. I am going on my 3rd month and no side effects except more tired than usual. I would think that you need to follow up with another med to keep your bones from losing the gains. I would never use prolia and made my endocrinologist aware of this. I did a CTX prior to starting . I had to push my endocrinologist for labs.
Please let us know what your DXA shows. Wishing you all the best.

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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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