Looking ahead after Tymlos: Reclast, Evenity or HRT?

Posted by psmnonna @psmnonna, May 29 8:39am

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

I'm glad your afib subsided and hope it has not returned! I think my rheumatology doc is leaning to reclast.
Unfortunately I had no bone markers done before starting Tymlos. Actually never heard of them until reading posts here. Would love to have had that knowledge before so I could've had some sort of baseline before starting any med. Wish bone markers were a required standard like dexa is....but that's another discussion.
Reading your post below I also was unaware that Tymlos or Forteo begins to wane in effectiveness before the full 2 yrs. I'm not excited about reclast as a future option as I'm not sure bisphonates really strengthen bone or just patch in random holes like spackle. Form without substance so to speak.
One would think that a disease that 10 million people have in the US would have more significant/effective treatments by now.
Thank you for your expertise!

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@psmnonna my afib had not subsided. I have episodes infrequently that are severe and expect that to continue, hopefully once a year (4 in the past year). They last a few hours.

Reclast is useful for locking in what you gained on Tymlos. Even if you don't like it for bone building, it coats the bones and maintains what you gained on anabolics. Without a bisphosphonate you will lose the density again.

Bone markers are controversial. My doctor doesn't use them and says they don't tell enough of the story of what is actually going on in bones. He said an entire conference could be held on this topic. I have gotten a few tests done by my PCP for Keith McCormick's consultation but they haven't been useful so not sure what to think.

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@windyshores

@psmnonna my afib had not subsided. I have episodes infrequently that are severe and expect that to continue, hopefully once a year (4 in the past year). They last a few hours.

Reclast is useful for locking in what you gained on Tymlos. Even if you don't like it for bone building, it coats the bones and maintains what you gained on anabolics. Without a bisphosphonate you will lose the density again.

Bone markers are controversial. My doctor doesn't use them and says they don't tell enough of the story of what is actually going on in bones. He said an entire conference could be held on this topic. I have gotten a few tests done by my PCP for Keith McCormick's consultation but they haven't been useful so not sure what to think.

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@windyshores So sorry the afib is a continuing issue. I have friends with afib and it is def not fun.
I have read McCormicks info and watched some of his videos in the last month. I haven't had any of the tests he recommends and I'm sure my docs just look to the standard treatments without considering other ideas or causes, for that matter. I get that the bone markers are controversial but would still have been nice to know. Not sure if it would be worth it now, as I have no "before" comparison.
As for Reclast, I will probably end up with that, but I have another year to marinate on that. Maybe the miracle cure will materialize...(LOL).
Any thoughts on Evenity or HRT for 20 yrs post menopause? Or any research that you are aware of pro/con?
Again .. thanks for your thoughts!!

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I have a month to consider my next option after 2-years on Tymlos. I am 72 and went into menopause after a full hysterectomy at 38 so I’m way past the the point where HRT would be a recommendation from most doctors, although my cardiologist feels very confident that they would be safe and effective in holding my gains from Tymlos. His extensive research gives me hope that they would seal my gains and also help with the side effects from severe loss of hormones I have suffered for many years. My rheumatologist recommends Reclast but I am hesitant on a once-a-year infusion rather than a medication I can stop if side effects are troubling. A bisphosphonate is not an option because of digestive issues. After 17 months on Tymlos I had an 11% improvement in bone density in my spine. I will have another scan in July once I’ve completed 2 years on Tymlos. I am not excited about another osteo med. I don’t want to lose my gains as I’m extremely active and don’t want to be overly concerned about a fracture. This journey of uncertainties is not an easy one. I wish there was a sure fix for bone improvement without side effects…I must be dreaming! 😂

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@dooshie Yes!! To all of what you just said! I'm going to ask about HRT as I'm not at risk for any cardiovascular events...so far...and it is reassuring to hear that your cardiologist thinks it will hold your gains. I really don't like the idea of Reclast or any bisphonates. If Tymlos does give me gains, as it has for so many others here, I want to preserve those with the least amount of side effects or adding additional meds as possible. Although HRT is a therapy, to me it just feels like adding back something natural that your body needs but can no longer produce on its own naturally. As opposed to drugs that interact with hormones and body systems in a negative way (kidneys, liver, even causing jaw and femur issues)
Cheers to this ever uncertain journey!

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@psmnonna

@dooshie Yes!! To all of what you just said! I'm going to ask about HRT as I'm not at risk for any cardiovascular events...so far...and it is reassuring to hear that your cardiologist thinks it will hold your gains. I really don't like the idea of Reclast or any bisphonates. If Tymlos does give me gains, as it has for so many others here, I want to preserve those with the least amount of side effects or adding additional meds as possible. Although HRT is a therapy, to me it just feels like adding back something natural that your body needs but can no longer produce on its own naturally. As opposed to drugs that interact with hormones and body systems in a negative way (kidneys, liver, even causing jaw and femur issues)
Cheers to this ever uncertain journey!

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@psmnonna…I think we’re on the right track, doing what we can while minimizing potential side effects from osteo drugs. I’m praying the bioidentical hormones will hold my gains and bring back some of the life I feel I’ve sacrificed not being on hormones all these years. I’ve had extensive cardio exams over the years and they all are good so I don’t think I’m at risk for cardio events or blood clots. My cardiologist will make certain everything looks good before prescribing. I’ll keep u posted. 🌹 Rose

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@dooshie

@psmnonna…I think we’re on the right track, doing what we can while minimizing potential side effects from osteo drugs. I’m praying the bioidentical hormones will hold my gains and bring back some of the life I feel I’ve sacrificed not being on hormones all these years. I’ve had extensive cardio exams over the years and they all are good so I don’t think I’m at risk for cardio events or blood clots. My cardiologist will make certain everything looks good before prescribing. I’ll keep u posted. 🌹 Rose

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Thank you!! I look forward to hearing about your progress. I am hopeful that bioidentical hormones work to preserve your gains and hopefully in the future will be a more accepted course after anabolics, instead of more meds. (I really cringe at going deeper into the drug rabbit hole).
Take care

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@psmnonna and @dooshie I wanted to do Evenity after Tymlos. I had heard about this in a master class with Lani Simpson and some on this forum had done it. My doc agreed (I kind of wore him down). Unfortunately, I had a rare side effect and only did 4 months, but it is more bone-building in the first months so I am hoping it helped. I read a study about doing 6 months Evenity, and 18 months Reclast vs one year of each. I also read about the possibility of doing Evenity in short bursts between other meds. There is a need for more research! I will do low dose Reclast next.

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@windyshores

@psmnonna and @dooshie I wanted to do Evenity after Tymlos. I had heard about this in a master class with Lani Simpson and some on this forum had done it. My doc agreed (I kind of wore him down). Unfortunately, I had a rare side effect and only did 4 months, but it is more bone-building in the first months so I am hoping it helped. I read a study about doing 6 months Evenity, and 18 months Reclast vs one year of each. I also read about the possibility of doing Evenity in short bursts between other meds. There is a need for more research! I will do low dose Reclast next.

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@windyshores So many variables and options it's hard to take it all in! Def not one size fits all.

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@psmnonna

@windyshores So many variables and options it's hard to take it all in! Def not one size fits all.

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@psmnonna I believe most people do Reclast or alendronate after Tymlos. (Prolia is an option not considered by my doctors.)

It really depends on your DEXA at the end of treatment.

My femur neck was still -3.6 so I wanted to try a few months, at least, of Evenity. But if all my scores had done as well as my spine (up to -2.5 after Tymlos) I would have just gone on to Reclast.

My personal view is that it isn't that complicated. My doc wants something strong enough to "lock in" gains. In his book "Great Bones", Keith McCormick writes that HRT as well as SERMS (Evista) may lower bone turnover but don't raise bone density. My doc would not use them to lock in gains after Tymlos because he wants something strong enough. (And I have had breast cancer so can't do HRT anyway.)

So after Tymlos I have considered either Evenity then Reclast, or directly to Reclast. I respect all the avenues different people try and hope that people trying different things will come back on the forum with results.

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@windyshores

@psmnonna I believe most people do Reclast or alendronate after Tymlos. (Prolia is an option not considered by my doctors.)

It really depends on your DEXA at the end of treatment.

My femur neck was still -3.6 so I wanted to try a few months, at least, of Evenity. But if all my scores had done as well as my spine (up to -2.5 after Tymlos) I would have just gone on to Reclast.

My personal view is that it isn't that complicated. My doc wants something strong enough to "lock in" gains. In his book "Great Bones", Keith McCormick writes that HRT as well as SERMS (Evista) may lower bone turnover but don't raise bone density. My doc would not use them to lock in gains after Tymlos because he wants something strong enough. (And I have had breast cancer so can't do HRT anyway.)

So after Tymlos I have considered either Evenity then Reclast, or directly to Reclast. I respect all the avenues different people try and hope that people trying different things will come back on the forum with results.

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@windyshores Thank you for your explanation and expertise. It is appreciated! You have given me lots of things to consider, and discuss with my doc at next appt. My lumbar was -3.6, and both hip and cervical were -1.6. Hoping I have gains in lumbar with no losses anywhere else! Time will tell,

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