After Tymlos

Posted by janism @janism, Dec 27, 2024

I have been taking Tymlos for just over a year and have an app't to talk to my provider about next steps. I tried alendronate before taking Tymlos and discontinued immediately due to reflux.

I take vitamin D, eat plenty of calcium, but don't exercise (I know I should). Experience with what is next? I've never been on any long-term medication before this and I'm kind of terrified of being tied to these meds and their side-effects.

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I understand your concerns about these meds but in my own bone journey I am grateful that they are available to our generation of women. What terrifies me are fractures. It isn't perfect but I just spoke with my sister in law whose mother did not have drug options and was bedridden for most of her life with multiple compression fractures. Perhaps their will be new options in the future and that we will also have more studies of bhrt and maintenance of bone health. My intention is not to scare you. We are all in the same boat trying to figure out the best path as individuals. I think this next generation of women facing menopause will demand more. Good luck on your own bone journey and do as much research as you can, find excellent providers who have educated themselves about menopause and osteoporosis. Sometimes we have to educate them.

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Fair enough! I am grateful for the availability of these drugs--I just don't trust anything I put in my body for such a long term.

I'll have a new scan in June and then my provider (a nurse practitioner specializing in osteoporosis) recommends Reclast unless the results of the scan are poor, in which case she recommends Prolia. I love the fact that there is no way to monitor progress sooner because insurance won't pay for an earlier scan.

Does that recommendation sound about right?

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Because I am not a medical professional I could not venture to say what is the best sequencing for you. Others here are more experienced. I am struggling with sequencing and I not entirely confident in my endocrinologist's recommendation of Prolia after Evenity. I started on bhrt about 3 1/2 months ago and I am hoping that has a positive effect on my bones. There is so much wisdom on this site. I am grateful every day that I'm not trying to figure this out on my own.

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Me endocrinologist told me he does an infusion- Reclast after two years on Tymlos. I am just beginning looking into Reclast.
I was going to decline the Tymlos, not being comfortable with administering it and medication itself until I experienced a vertebral compression fracture this month. Taking the medication is now a bright spot of help to me.

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I felt safe on Tymlos! I did Evenity after Tymlos for just a few months, then Reclast. Reclast can only be taken 3-5 years and my bone density is still not where I want it to be so I am going to ask if I can stop Re;cast for a bit and go back on a bone builder. Basically alternate with Reclast. There is not a lot of info out there on what to do long term.

Prolia can be taken longer than Reclast but my doctors don't use it due to the dramatic rebound effect with loss of bone density and increase in fracture risk when stopped. It is quite potent for increasing DEXA. Lately McCormick (author of "Great Bones" has been cited here as saying we could do a year of Prolia and then the rebound might be gentler and Reclast could handle it reliably.

I am another patient and just sharing what I have experienced or heard so always check with your doctor.

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@janism

Fair enough! I am grateful for the availability of these drugs--I just don't trust anything I put in my body for such a long term.

I'll have a new scan in June and then my provider (a nurse practitioner specializing in osteoporosis) recommends Reclast unless the results of the scan are poor, in which case she recommends Prolia. I love the fact that there is no way to monitor progress sooner because insurance won't pay for an earlier scan.

Does that recommendation sound about right?

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I have paid $50 out of pocket for more frequent scans. I feel the info is worth the out of pocket cost.

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I did Reclast almost 3 weeks ago and had an acute side effect no one talks about. Inflammation in my esophagus and colon. I am still trying to recover and am hanging on by a thread. Try something you can stop and get out of your system quickly just in case. It’s rare but according to my doctors now that it has happened, they have seen it before. Who knew? Choose carefully. Best of luck

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@annar

I did Reclast almost 3 weeks ago and had an acute side effect no one talks about. Inflammation in my esophagus and colon. I am still trying to recover and am hanging on by a thread. Try something you can stop and get out of your system quickly just in case. It’s rare but according to my doctors now that it has happened, they have seen it before. Who knew? Choose carefully. Best of luck

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@annar the oral bisphosphonates can be tough on the esophagus.

Please let us know if this turns out to be part of the short term "acute phase reaction" that is common with the first infusion. I hope so! It tends to happen only with the first infusion, according to mu doctors. I had fever, fluish symptoms and GI stuff.

I posted elsewhere about adjustments to dosing, duration of infusion, timing and so on.

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