Prescribed Tymlos after Evenity

Posted by hollygs @hollygs, Nov 17, 2024

I completed a one year course of Evenity in September 2023. I switched endocrinologists afterwards, and he prescribed Fosamax after a brief discussion. I contacted the doctor who had prescribed Evenity, and he advised that I come to the office. He prescribed Tymlos, which I have now been on for 8 months. I changed my medical insurance to Medicare, and the doctor who prescribed both Evenity and Tymlos doesn't take it. I went back to the doctor who prescribed Fosamax after Evenity and he freaked out and said Tymlos is NEVER given after Evenity. His colleague in the same office concurred. He then ordered Prolia. I contacted the manufacturers of both Evenity and Tymlos, and they were very considerate and informed me that to their knowledge, there have been no studies about using Tymlos after Evenity. I am currently on a wait list for a new endocrinologist. I have a history of vertebral fractures and I need dental work, and I don't want to be on Prolia. I can finish the remaining months of Tymlos, or switch to Fosamax and wait and see what the new endocrinologist recommends. Needless to say, the situation is not ideal as I'm winging it. That being said, I know that treatment for osteoporosis is complicated and we patients have to be our own advocates and do a lot of research. I'm not opposed to that, but I'm not finding any information for protocols that have a progression of Evenity to Tymlos and then? If anyone has any information to share, I'd really appreciate it.

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@laujodrik

Holly you mentioned you had fractures. I’m curious did you stop the meds or hope with proper care your osteoporosis would get better. I lift weights and try to walk everyday. I’ve heard after getting off Prolia nothing will work unless you go back on some sort of meds. My osteoporosis wasn’t terrible -2.8 when I started Prolia and sometimes I wish I never started. A lot of my friends never had a reaction so I figured I would do something. I’m 78 now and thin, and pretty much in shape. I guess we can’t look back.

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@laujodrik I was started on Fosamax after a vertebral fracture and a DEXA - 4.3 (spine) and two months later was referred to a metabolic bone specialist by my podiatrist. He prescribed Evenity, and my first dose was five months after the fracture. I've been on meds consistently since 6/22. There are a lot of posts here about discontinuing Prolia - have you been following those?

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The reason they want me off Prolia is I started to have jaw issues. My dentist thought it was osseonnecrosis which is a serious jaw disease, and a rare side effect of Prolia. The MRI and blood tests were negative. I’m still having problems with my mouth/jaw and I have concerns about going on that type of drug. Tymlos/Forteo is my only choice, unless I want to believe the test results. It’s given me a lot of anxiety. Unfortunately, my dentist had a death in his family and won’t be back for a while. My appointment with my Rheumatologist is on February 25 and a decision has to be made by then. I’d love to go on Evenity, it is the same class as Prolia though stronger. I’m not sure what the answer is for me.

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@laujodrik

The reason they want me off Prolia is I started to have jaw issues. My dentist thought it was osseonnecrosis which is a serious jaw disease, and a rare side effect of Prolia. The MRI and blood tests were negative. I’m still having problems with my mouth/jaw and I have concerns about going on that type of drug. Tymlos/Forteo is my only choice, unless I want to believe the test results. It’s given me a lot of anxiety. Unfortunately, my dentist had a death in his family and won’t be back for a while. My appointment with my Rheumatologist is on February 25 and a decision has to be made by then. I’d love to go on Evenity, it is the same class as Prolia though stronger. I’m not sure what the answer is for me.

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@laujodrik not sure what you mean when you write that Evenity is in the same class as Prolia. Prolia is a very strong anti-resorptive and works by inhibiting RANKL. Evenity is both anabolic and anti-resorptive (the only drug that is both) and inhibits sclerostin. Their mechanisms are very different. But Evenity does carry some risk for jaw issues, though less so than Prolia and bisphosphonates.

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My dr said if any meds that may have jaw issues is off limits. I guess I misspoke when I said it’s in the same class. I was told if I can’t be on Prolia which wasn’t working for me, and my jaw issues, which at this time still has been undiagnosed. They would not put me on Evenity. I would prefer Evenity versus injecting myself everyday. I may not have a choice. I haven’t done as much research as I should at this point. I’m dealing with my jaw and it’s very concerning.

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@laujodrik

My dr said if any meds that may have jaw issues is off limits. I guess I misspoke when I said it’s in the same class. I was told if I can’t be on Prolia which wasn’t working for me, and my jaw issues, which at this time still has been undiagnosed. They would not put me on Evenity. I would prefer Evenity versus injecting myself everyday. I may not have a choice. I haven’t done as much research as I should at this point. I’m dealing with my jaw and it’s very concerning.

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@laujodrik My understanding is that your doctor won't prescribe Evenity. Is that correct? Your tests indicate that you do not have osteonecrosis of the jaw, but you and your doctor and dentist have concerns about your jaw issues and want you off Prolia, right? Your doctor wants to prescribe Tymlos but you don't want that for a variety of reasons. You feel like you must make a decision, but your appointment with your doctor is February 25th and your dentist is not available for consultation due to a death in the family. You said that you haven't done as much research as you should. Do you see any solutions for any of the above and are there any actions you can take to help yourself make a decision and move forward ?

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@hollygs

@laujodrik My understanding is that your doctor won't prescribe Evenity. Is that correct? Your tests indicate that you do not have osteonecrosis of the jaw, but you and your doctor and dentist have concerns about your jaw issues and want you off Prolia, right? Your doctor wants to prescribe Tymlos but you don't want that for a variety of reasons. You feel like you must make a decision, but your appointment with your doctor is February 25th and your dentist is not available for consultation due to a death in the family. You said that you haven't done as much research as you should. Do you see any solutions for any of the above and are there any actions you can take to help yourself make a decision and move forward ?

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That pretty much sums it up. My MRI shows a cyst on my lower sinus and I’m hoping that may be the reason for my jaw pain. I have an apportionment with an ENT Dr today. It’s a water cyst and everything I’ve read you can leave them alone unless they’re creating a problem. The Prolia was not giving me the results the Dr wanted. My forearms are still osteoporosis. She wanted me to go on Evenity until I started having issues with my implants in my mouth and having jaw pain, which no one seems to know why. My dentist is convinced I have osteonecrosis and the tests say no. . I will take Tymlos given no choice. The other alternative I can’t live with. I was just diagnosed with a mild leak in my heart and I believe it’s giving me a higher heart rate than I always had in the past. . With Tymlos raising your heart rate I wonder if it can create a problem. I could be suffering from anxiety as well, which can increase my heart rate. I’m sort of stuck between a rock and a hard place.

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@laujodrik

That pretty much sums it up. My MRI shows a cyst on my lower sinus and I’m hoping that may be the reason for my jaw pain. I have an apportionment with an ENT Dr today. It’s a water cyst and everything I’ve read you can leave them alone unless they’re creating a problem. The Prolia was not giving me the results the Dr wanted. My forearms are still osteoporosis. She wanted me to go on Evenity until I started having issues with my implants in my mouth and having jaw pain, which no one seems to know why. My dentist is convinced I have osteonecrosis and the tests say no. . I will take Tymlos given no choice. The other alternative I can’t live with. I was just diagnosed with a mild leak in my heart and I believe it’s giving me a higher heart rate than I always had in the past. . With Tymlos raising your heart rate I wonder if it can create a problem. I could be suffering from anxiety as well, which can increase my heart rate. I’m sort of stuck between a rock and a hard place.

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Good luck with your ENT visit. I'm guessing you have a cardiologist that you can confer with regarding your concern about any potential cardiac issues with Tymlos. Aside from self-care, you can discuss your anxiety with all of your providers. They might refer you to a program like biofeedback/meditation and the like. When you see your endo, you can be well-informed about your options and discuss what he will do if you don't respond well to Tymlos. If you do respond well, what is the treatment plan moving forward?
Best wishes to you, take care.

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Thank you so much for all your input.

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@laujodrik

Thank you so much for all your input.

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@laujodrik I have occasional afib with heart rate close to 200, and during Tymlos for two years I didn't have a single episode. I had a blood pressure cuff and if bp was low I hydrated and had something salty. That seemed to help the increase in heart rate problem.

My main concerns for you are rebound and also whether Tymlos will work after prolia. Dr. Ben Leder (YouTube) and Keith McCormick say it isn't very effective after Prolia.

Evenity is a mild resorptive and more anabolic at first. Ben Leder's chart shows it is not very anti-resorptive at first. Are you able to get a second endo opinion?

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I am going to another dentist first to rule out oseocronosis which is my main concern of taking Evenity. My dr is also concerned. If I definitely can rule out jaw problems I can take the Evenity. My osteoporosis is worse in my forearms than any other body part. My total figure is 2.6. My hip and spine are osteopenia. I just finished my Prolia 2 weeks ago so I do have a bit of time. If I don’t have a choice no matter what is written I may have to go on Tymlos and pray it works or keeps me status quo. I have an appointment with my Rheumatologist at the end of February. If I get some answers I’m hoping she’ll have a cancellation and will see me sooner. I’m also dealing with angina. I just had an echo and that concerns me regarding the Tymlos. I’m all over the place and need some answers. Right now I only have questions.

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