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Looking ahead after Tymlos: Reclast, Evenity or HRT?

Posted by psmnonna @psmnonna, May 29, 2024

Sorry this may be a bit long, but here is some backstory:

I am on month 5 of 24 of Tymlos. I'm not loving it much, but tolerating it so far. Side effects of rapid heart rate and sometimes shoulder, chest or back pain for about 30-45 mins following injection. Doc said not to worry, so ignoring it for now. Anyone know of damage to the heart from chemically induced rapid heart rate daily over a 2 yr period? I work out, run, bike, walk, hike, yoga and do weights. As I have for over 40 years. Along with healthy mostly veggie diet, fresh veggies, fresh fruit, high protein from nuts, beans, tofu, etc. My calcium intake easily surpasses the 1200mg daily recommendation so I take no extra calcium other than what is in my daily multivitamin. For about 3 years I've added a D3, K2 as MK-7, magnesium and fish oil. Where the osteoporosis came from is anyone's guess. No family history, and at 66 I am younger than both of my sisters who are 72 and 77 with no osteoporosis. Mom passed at 93 with only 2 years of Reclast before that as she had no osteo either, just osteopenia.....but she was in her 90s before she started. So here I am young, active and healthy (I like to think, anyway) with a spine Dexa of -3.6. Since I already do everything that is recommended and have for years before my diagnosis I decided to go the drug route, which makes me cringe. But seeing as my lifestyle didn't prevent a low dexa score I saw few alternatives.

My main question for those of you out there in the know is where do I go after my 2 years of Tymlos?
~I have recently seen some things about HRT for people over 10 years past menopause. Apparently new research points to this being an OK alternative since past studies were not correct?? So basically a whole generation told that HRT was dangerous and caused increased risk of stroke and heart attack was incorrect (which is why I never started it)? But does that mean that it would be OK to start HRT at 68, the age I will be after Tymlos?
~Evenity....is this similar to HRT?
~Reclast...am I correct in thinking that this is a super-sized yearly dose of a bisphosphonate? What does this do to osteonecrosis of the jaw and spontaneous femur fractures over time? How many years can you take it and if it has a limitation, then what?
Thanks for any and all insights. 🙂

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psmnonna | @psmnonna | Sep 20 8:15am
In reply to @sl303 "I was telling someone else about this and decided I should make a separate page for..." + (show)
Profile picture for sl303 @sl303

I was telling someone else about this and decided I should make a separate page for it but also sending to all the recent replies. The struggle is horrible and the doctors feel like they've solved the problem.

I want this thing LOEP Local Osteo Enhancement Procedure https://pmc.ncbi.nlm.nih.gov/articles/PMC12035697/

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@sl303 Very interesting study on LOEP. Never heard of it! I hope that more research studies involving more people are done.

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walkert | @walkert | Sep 20 8:37am

I am sorry I do not have information to offer. I would just like to share that I am in a similar situation. I have been a year and four months on Forteo. I too am wondering what to do next. Forteo is only recommended for two years. I am thinking of spreading out my last six months of Forteo by taking a month off in between.
I think of it as weening off. And not starting anything else for a while. I wish I could ask my doctor whether she has heard of anyone trying, but I know a professional needs to just go by " the book."

If anyone knows how I can self pay for testing markers during and after that experimenting, let me know. I assume my doctor would not order those for me and Medicare would not pay.

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mayblin | @mayblin | Sep 20 9:57am
In reply to @walkert "I am sorry I do not have information to offer. I would just like to share..." + (show)
Profile picture for walkert @walkert

I am sorry I do not have information to offer. I would just like to share that I am in a similar situation. I have been a year and four months on Forteo. I too am wondering what to do next. Forteo is only recommended for two years. I am thinking of spreading out my last six months of Forteo by taking a month off in between.
I think of it as weening off. And not starting anything else for a while. I wish I could ask my doctor whether she has heard of anyone trying, but I know a professional needs to just go by " the book."

If anyone knows how I can self pay for testing markers during and after that experimenting, let me know. I assume my doctor would not order those for me and Medicare would not pay.

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I’m going to tag @gently so she can offer her perspective.

The usual follow-up medications after Forteo or Tymlos are antiresorptives, such as Fosamax or IV Reclast. SERMs, like Raloxifene, are less commonly used nowadays. Occasionally, we may see Forteo or Tymlos followed by another anabolic, such as Evenity, when additional fracture reduction or further bmd improvement is needed.

If you are at an appropriate age (this may be less relevant depending on your individual risk profile) and have had a thorough risk/benefit assessment, HRT could be an option. We have a member, @teb, on this forum who has been using bHRT for maintenance after a course of Forteo for many years. I'm also using bioidentical HRT for maintaining bmd after Forteo.

For self-pay bone marker testing, the best pricing I’m aware of is through JasonHealth.com.

Best wishes

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