Can you take tymlos and prolia

Posted by burrells5 @burrells5, Jan 10, 2024

Anyone on tymlos and prolia or switched to tymlos after prolia? I still have 3 months of prolia in me and 3 weeks ago started tymlos. New dr new everything and I don't know whether to trust her or not. I had 6 compression Fractures when I was off prolia for 3 months due to insurance. Will this happen again or will tymlos be a replacement. I also read tymlos doesn't work well after prolia??? She also says no need for blood test that I read lots of people have. No need for follow up dexa. How do I know is working?

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@laujodrik

I was on Prolia for 4 years and needed dental work and waited almost 3 months after my last shot was due. Now I’m being tested for ONJ, which scares me. I was due in December for my next Prolia. I passed because of dental work. My rheumatologist is taking a bone density next week and if I’m not good she wants me to go on Tymlos. If I’m ok she wants me to wait a little longer. I’ll be 4 months past my due date and almost 9 months after my last shot. I’ve been working out with weights and hoping I can wait a little longer to start the Tymlos. I feel like I’m damned if I do and in deep trouble if I don’t. . I may have to lay out of pocket for the bone density. It’s very inexpensive so it’s worth it to me. I’m petrified about the ONJ which is life changing and also about the Tymlos. I have great drs p, but it’s still my life. Any suggestions about starting Tymlos after being off the Prolia for a little over 3 months v

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Most people do fine with Tymlos. You can't go off Prolia and do nothing. Lifting weights isn't going to be the answer.

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@njx58

Most people do fine with Tymlos. You can't go off Prolia and do nothing. Lifting weights isn't going to be the answer.

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I know. I was wondering 2 things…is that enough time to be off Prolia not to get a rebound. I’m also concerned after taking Tymlos for 2 years what do I do then if I have ONJ. There are no other meds to take.

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@laujodrik

I was on Prolia for 4 years and needed dental work and waited almost 3 months after my last shot was due. Now I’m being tested for ONJ, which scares me. I was due in December for my next Prolia. I passed because of dental work. My rheumatologist is taking a bone density next week and if I’m not good she wants me to go on Tymlos. If I’m ok she wants me to wait a little longer. I’ll be 4 months past my due date and almost 9 months after my last shot. I’ve been working out with weights and hoping I can wait a little longer to start the Tymlos. I feel like I’m damned if I do and in deep trouble if I don’t. . I may have to lay out of pocket for the bone density. It’s very inexpensive so it’s worth it to me. I’m petrified about the ONJ which is life changing and also about the Tymlos. I have great drs p, but it’s still my life. Any suggestions about starting Tymlos after being off the Prolia for a little over 3 months v

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Please please please read up on stopping prolia. Many many people have had compression fractures from stopping. The protocol is NOT to take Tymlos afterwards!!! It is to immediately take a bisphosphonate like Reclast. The longer you have been on prolia the worse the rebound can be. I had been on prolia for 4.5 years. My dr left and had to find new dr, deal with insurance, etc. No one had ever informed me about not stopping or being late. 4 months after my injection was due I began having compression fractures. I had 6 in total. It was absolutely awful and had impacted my entire life. I am only 57. This was fall of 2023. No one seemed to know what to do so they gave me another prolia injection (I had to pay total cost out of pocket because of still dealing with insurance). I had vertebroplasty Dec of 23. Jan of 24 I was sent to a "specialist" in OP. She started me on Tymlos. I asked what happens in May when the prolia runs out and Im supposed to have another shot? I was told tymlos would keep me from fracturing again. After reading tons of research stating prolia MUST be followed by bisphosphonate, and hearing other terrible stories, I switched drs. I drove 3 hrs one way to OP clinic with 9 dr whose degrees are mostly from Duke, Yale, and Johns Hopkins including my dr. He basically said same thing even though I tried to tell him what research I had read. Both refused to do CTX blood markers. My prolia ran out in May and 3 months later I had 2 more vertebrae fractures. My CTX was very high and continued to rise. Saw a different dr in same practice and was told "You are now in a hole and now we have to dig you out" In my chart, it states all fractures were from Prolia rebound. I am now told " the most complicated case they have ever had and on uncharted territory." Because most people follow the correct protocol for the OP meds. I had a Reclast infusion 6 mo ago and currently monitoring CTX every 2 months. The Reclast brought the CTX down. You can have prolia rebound for 18-24 months. I am very healthy, eat healthy, lift weights, walk, hike, long distance cyclist. Before fractures I worked cleaning houses and doing construction work so lots of weight bearing. I don't want to scare you or discount your dr but please do what you can to prevent this. I now can not work and can't do a lot of things I love. I have pain every day but is better than it was those first 9 mo, not to mention all the $$$$$ I have spent. I also have been in contact with Dr Keith McCormick. He has been counseling me on things to do and what to ask my dr. Even the best drs don't seem to know all the research and know what to do. Prolia is a terrible terrible drug. I never had any side effects and I suppose I would be great today had I never been late. I literally have spent enough research hours to have a degree in OP. Please research. There is no guarantee that you will fracture but no guarantee you will not. Good luck.

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@burrells5

Please please please read up on stopping prolia. Many many people have had compression fractures from stopping. The protocol is NOT to take Tymlos afterwards!!! It is to immediately take a bisphosphonate like Reclast. The longer you have been on prolia the worse the rebound can be. I had been on prolia for 4.5 years. My dr left and had to find new dr, deal with insurance, etc. No one had ever informed me about not stopping or being late. 4 months after my injection was due I began having compression fractures. I had 6 in total. It was absolutely awful and had impacted my entire life. I am only 57. This was fall of 2023. No one seemed to know what to do so they gave me another prolia injection (I had to pay total cost out of pocket because of still dealing with insurance). I had vertebroplasty Dec of 23. Jan of 24 I was sent to a "specialist" in OP. She started me on Tymlos. I asked what happens in May when the prolia runs out and Im supposed to have another shot? I was told tymlos would keep me from fracturing again. After reading tons of research stating prolia MUST be followed by bisphosphonate, and hearing other terrible stories, I switched drs. I drove 3 hrs one way to OP clinic with 9 dr whose degrees are mostly from Duke, Yale, and Johns Hopkins including my dr. He basically said same thing even though I tried to tell him what research I had read. Both refused to do CTX blood markers. My prolia ran out in May and 3 months later I had 2 more vertebrae fractures. My CTX was very high and continued to rise. Saw a different dr in same practice and was told "You are now in a hole and now we have to dig you out" In my chart, it states all fractures were from Prolia rebound. I am now told " the most complicated case they have ever had and on uncharted territory." Because most people follow the correct protocol for the OP meds. I had a Reclast infusion 6 mo ago and currently monitoring CTX every 2 months. The Reclast brought the CTX down. You can have prolia rebound for 18-24 months. I am very healthy, eat healthy, lift weights, walk, hike, long distance cyclist. Before fractures I worked cleaning houses and doing construction work so lots of weight bearing. I don't want to scare you or discount your dr but please do what you can to prevent this. I now can not work and can't do a lot of things I love. I have pain every day but is better than it was those first 9 mo, not to mention all the $$$$$ I have spent. I also have been in contact with Dr Keith McCormick. He has been counseling me on things to do and what to ask my dr. Even the best drs don't seem to know all the research and know what to do. Prolia is a terrible terrible drug. I never had any side effects and I suppose I would be great today had I never been late. I literally have spent enough research hours to have a degree in OP. Please research. There is no guarantee that you will fracture but no guarantee you will not. Good luck.

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Unfortunately, I am in the process of being tested for Osteocronosis of the jaw from Prolia. If I do have this awful disease the only medicine I can take is Tymlos or Forteo. The other meds will do more harm to my jaw. If you’re not aware of what this is read up on it it’s devastating. I am already in a lot of pain from it and can’t cause more damage. I’m pretty much between a rock and a hard place. My drs are very aware of the rebound effect from Tymlos going off Prolia and explained it to me. I’m off Prolia for 3 months now and they’re bringing me in for another bone density to see if I can wait any longer to start something. I am going to mention to my Rheumatologist about the CTX Blood Markers and see if I can have that test too. I live in Miami and I’m of the age that I’m on Medicare so I don’t have the expense that you encountered. I’m so sorry for everything you’ve been through. I did read the info regarding Prolia and they mentioned about a 4% chance of this Osteocronosis especially in cancer patients, which I am not. I never had any issues and now this is mind blowing. I have a girlfriend that went off with no problems. I hope I’m one of the few lucky ones. Good luck to you as well.

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@laujodrik

Unfortunately, I am in the process of being tested for Osteocronosis of the jaw from Prolia. If I do have this awful disease the only medicine I can take is Tymlos or Forteo. The other meds will do more harm to my jaw. If you’re not aware of what this is read up on it it’s devastating. I am already in a lot of pain from it and can’t cause more damage. I’m pretty much between a rock and a hard place. My drs are very aware of the rebound effect from Tymlos going off Prolia and explained it to me. I’m off Prolia for 3 months now and they’re bringing me in for another bone density to see if I can wait any longer to start something. I am going to mention to my Rheumatologist about the CTX Blood Markers and see if I can have that test too. I live in Miami and I’m of the age that I’m on Medicare so I don’t have the expense that you encountered. I’m so sorry for everything you’ve been through. I did read the info regarding Prolia and they mentioned about a 4% chance of this Osteocronosis especially in cancer patients, which I am not. I never had any issues and now this is mind blowing. I have a girlfriend that went off with no problems. I hope I’m one of the few lucky ones. Good luck to you as well.

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It’s me again. I noticed last time I did take a CTX blood marker and mine was within range. I called today and said as well as the bone density I want another one and I’m going to my dr this morning and he’s going to draw some blood and get me the results. This is probably more accurate than a bone density with all the arthritis I have.

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@burrells5

Please please please read up on stopping prolia. Many many people have had compression fractures from stopping. The protocol is NOT to take Tymlos afterwards!!! It is to immediately take a bisphosphonate like Reclast. The longer you have been on prolia the worse the rebound can be. I had been on prolia for 4.5 years. My dr left and had to find new dr, deal with insurance, etc. No one had ever informed me about not stopping or being late. 4 months after my injection was due I began having compression fractures. I had 6 in total. It was absolutely awful and had impacted my entire life. I am only 57. This was fall of 2023. No one seemed to know what to do so they gave me another prolia injection (I had to pay total cost out of pocket because of still dealing with insurance). I had vertebroplasty Dec of 23. Jan of 24 I was sent to a "specialist" in OP. She started me on Tymlos. I asked what happens in May when the prolia runs out and Im supposed to have another shot? I was told tymlos would keep me from fracturing again. After reading tons of research stating prolia MUST be followed by bisphosphonate, and hearing other terrible stories, I switched drs. I drove 3 hrs one way to OP clinic with 9 dr whose degrees are mostly from Duke, Yale, and Johns Hopkins including my dr. He basically said same thing even though I tried to tell him what research I had read. Both refused to do CTX blood markers. My prolia ran out in May and 3 months later I had 2 more vertebrae fractures. My CTX was very high and continued to rise. Saw a different dr in same practice and was told "You are now in a hole and now we have to dig you out" In my chart, it states all fractures were from Prolia rebound. I am now told " the most complicated case they have ever had and on uncharted territory." Because most people follow the correct protocol for the OP meds. I had a Reclast infusion 6 mo ago and currently monitoring CTX every 2 months. The Reclast brought the CTX down. You can have prolia rebound for 18-24 months. I am very healthy, eat healthy, lift weights, walk, hike, long distance cyclist. Before fractures I worked cleaning houses and doing construction work so lots of weight bearing. I don't want to scare you or discount your dr but please do what you can to prevent this. I now can not work and can't do a lot of things I love. I have pain every day but is better than it was those first 9 mo, not to mention all the $$$$$ I have spent. I also have been in contact with Dr Keith McCormick. He has been counseling me on things to do and what to ask my dr. Even the best drs don't seem to know all the research and know what to do. Prolia is a terrible terrible drug. I never had any side effects and I suppose I would be great today had I never been late. I literally have spent enough research hours to have a degree in OP. Please research. There is no guarantee that you will fracture but no guarantee you will not. Good luck.

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@burrells5, thank you very much for sharing your personal story! For sure it will help someone who reads it.

It is disturbing to say the very least that the lack of standard care still exists involving a powerful drug such as prolia. Minimally, any patients who receive prolia injection should be forewarned the danger of delaying a dose, especially when quitting altogether. Many unforeseen scenarios could occur - insurance changes, doctors leaving practices, dosing scheduling troubles (man-made or during natural disasters), and newly emerging adverse effects/disease states which can prevent someone from getting more doses of prolia. One mishap could alter someone's life forever.

I admire your strength and resilience. My heart and prayers are with you.

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