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. 🙂

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Profile picture for windyshores @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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I will take 6 Evenity injections and then Reclast annually for 3 years.
I have a bone DEXA scheduled in December but the cost is $800
Has anyone been successful in getting Medicare to cover before the two year wait between scans?

REPLY
Profile picture for psmnonna @psmnonna

Thought I'd update on things since my last post here.

Now on month 20 of 24 of Tymlos. No clear decision yet as to what I'm going to push for when Tymlos is done. As stubbornly as 3 endos and a rheumatologist have vetoed HRT, I'm going to be just that stubborn in vetoing Prolia and bisphosphonates.

But I'm strongly in favor of starting HRT as everything I've read and researched point to it being a help and not a hindrance for women of any age. "It's never too late to start" is the mantra from many of the podcasts I've listened to. I decided I needed to check things off the list myself in order to try and pursue HRT. Since I'm beyond the proper age limit and years since menopause, any doctor I've seen so far has been strongly against it. After 2 months on a wait list, I was able to see a cardiologist to have some tests done. I was (and still am) having heart racing issues after Tymlos injections. Two stress tests, an echocardiogram and calcium CT score later all checked out well. No issues except for a heart murmur that was not concerning. He did, however, prescribe a statin since my blood cholesterol has steadily risen since beginning Tymlos. Total cholesterol was at a staggering 280 last January and based on that number he gave the statin. Interesting thing is on that very morning of my appt. with him, I had another fasting blood test and the results of that one showed my cholesterol dropped from 280 to 206 between January and May! I don't know how I did it, but I'm going with it and do not need to take the statin at this point. Cardiologist said to retest in 6 months to make sure it wasn't some sort of error or fluke. He also said he didn't know enough about HRT to have an opinion, so I'm also going with my own recommendation (HA!) and my test results which show my heart is fine and shows no increased risk of cardiovascular events or stroke. Check that off.

After another wait list with a gyn who specializes in HRT, she was the first Dr to actually listen to me. Although she had never heard of Tymlos, she did have knowledge of osteoporosis and hormone therapy. Even though HRT is not prescribed in the US as a treatment for osteoporosis (it is in other countries) it is prescribed to alleviate the vasomotor symptoms. So since I never stopped having hot flashes, night sweats and insomnia she did prescribe a weekly low dose Estradiol patch at 0.025 and 100mg of bioidentical progesterone/day. I asked if I should get any hormone testing done and she said I could if I wanted to, but based on the years since menopause it wouldn't make a difference. Basically, I have next to nothing left of estrogen. She said any increased level of hormone at this point would probably be a shock to my system so let's start low and slow. She also said that after this long the HRT would not help with the osteoporosis, as in not help to increase bone growth. Even so, I'm hopeful that it will at least preserve what I have been able to add with Tymlos and at least maintain. Fingers crossed! It's only been a few days since I started so not much difference to detect yet. I am sleeping a bit sounder and not waking as often, so maybe there is progress starting??

I'll be very interested in seeing my next dexa score in 2026. Also will be an interesting conversation with my anti HRT endo when I tell her what I did. I'll probably get an office referral and detention. But I've always been a bit of a rebel.
Cheers!

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psmnonna, that’s a big step forward - it takes courage to sort through different opinions and make the choice that feels right. The better sleep you’re noticing is likely thanks to the micronized progesterone, and you may also find some urogenital benefits along the way, though breast tenderness can show up too (it goes away after a few months).

For cardiovascular health, I’ve found cardiologists the best at weighing risks. In my case, even with mild cad (cac 38), two cardiologists didn’t hesitate to give me the green light since my ldl-c is well under 50 (on a statin) and I don’t have a family history. In your shoes, I’d keep a close eye on ldl-c and if possible, consider Lp(a) and ApoB testing for a fuller picture.

For bone benefits, tracking bone turnover markers can be reassuring. My CTX has stayed 110–130 after six months on HRT, showing a good antiresorptive effect of estrogen (same low dose as yours), even though my blood estradiol level barely moved (from 18 to 21).

And of course, im sure you’ll continue with annual mammograms as a precaution.

Now the only thing left is mending PR with your endos 😉 I’m cheering you on in this new chapter and here to share experiences.

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Profile picture for clowny @clowny

I will take 6 Evenity injections and then Reclast annually for 3 years.
I have a bone DEXA scheduled in December but the cost is $800
Has anyone been successful in getting Medicare to cover before the two year wait between scans?

Jump to this post

@clowny
Medicare should cover the cost of your dexa scans more ofter than the "every 2 yrs" that is normally allowed. Since you are taking now, or going to take, Evenity the Dr can order scans more often to monitor you and the effects of the meds. I've had blood tests and other scans before the required time and Medicare has covered the extra tests for just that reason.

REPLY
Profile picture for mayblin @mayblin

psmnonna, that’s a big step forward - it takes courage to sort through different opinions and make the choice that feels right. The better sleep you’re noticing is likely thanks to the micronized progesterone, and you may also find some urogenital benefits along the way, though breast tenderness can show up too (it goes away after a few months).

For cardiovascular health, I’ve found cardiologists the best at weighing risks. In my case, even with mild cad (cac 38), two cardiologists didn’t hesitate to give me the green light since my ldl-c is well under 50 (on a statin) and I don’t have a family history. In your shoes, I’d keep a close eye on ldl-c and if possible, consider Lp(a) and ApoB testing for a fuller picture.

For bone benefits, tracking bone turnover markers can be reassuring. My CTX has stayed 110–130 after six months on HRT, showing a good antiresorptive effect of estrogen (same low dose as yours), even though my blood estradiol level barely moved (from 18 to 21).

And of course, im sure you’ll continue with annual mammograms as a precaution.

Now the only thing left is mending PR with your endos 😉 I’m cheering you on in this new chapter and here to share experiences.

Jump to this post

@mayblin
Thank you for the cheers! I am definitely going to watch all things cholesterol closely. My most recent and surprising bloodwork showed ldl was in the slightly elevated levels, but hdl was high so offset the total leaving me in the clear....for now. I will ask about Lp-a and ApoB before my next blood tests.

Unfortunately, I have no beginning point of reference for CTX or P1NP scores. I had never heard of those tests before joining here. Which was after I had already started Tymlos. None of the endos or the rheumatologist I see do those tests. At my last dexa at the University of Iowa, I asked the tech if they had a REMS capable machine and she asked what REMS was. So never had that to see what my bone strength is either.

Like I read here once on a post....it's like steering a boat in the dark without a compass.
Just doing whatever I can to stay afloat!

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Profile picture for psmnonna @psmnonna

@clowny
Medicare should cover the cost of your dexa scans more ofter than the "every 2 yrs" that is normally allowed. Since you are taking now, or going to take, Evenity the Dr can order scans more often to monitor you and the effects of the meds. I've had blood tests and other scans before the required time and Medicare has covered the extra tests for just that reason.

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Thanks. I thought it should be covered.

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Profile picture for psmnonna @psmnonna

@clowny
Medicare should cover the cost of your dexa scans more ofter than the "every 2 yrs" that is normally allowed. Since you are taking now, or going to take, Evenity the Dr can order scans more often to monitor you and the effects of the meds. I've had blood tests and other scans before the required time and Medicare has covered the extra tests for just that reason.

Jump to this post

If you are taking medication for osteoporosis, Medicare will cover a DEXA even more frequently than usual. I had two DEXAs not quite a year apart, and it was no problem. Being on meds is the key.

REPLY
Profile picture for psmnonna @psmnonna

Thought I'd update on things since my last post here.

Now on month 20 of 24 of Tymlos. No clear decision yet as to what I'm going to push for when Tymlos is done. As stubbornly as 3 endos and a rheumatologist have vetoed HRT, I'm going to be just that stubborn in vetoing Prolia and bisphosphonates.

But I'm strongly in favor of starting HRT as everything I've read and researched point to it being a help and not a hindrance for women of any age. "It's never too late to start" is the mantra from many of the podcasts I've listened to. I decided I needed to check things off the list myself in order to try and pursue HRT. Since I'm beyond the proper age limit and years since menopause, any doctor I've seen so far has been strongly against it. After 2 months on a wait list, I was able to see a cardiologist to have some tests done. I was (and still am) having heart racing issues after Tymlos injections. Two stress tests, an echocardiogram and calcium CT score later all checked out well. No issues except for a heart murmur that was not concerning. He did, however, prescribe a statin since my blood cholesterol has steadily risen since beginning Tymlos. Total cholesterol was at a staggering 280 last January and based on that number he gave the statin. Interesting thing is on that very morning of my appt. with him, I had another fasting blood test and the results of that one showed my cholesterol dropped from 280 to 206 between January and May! I don't know how I did it, but I'm going with it and do not need to take the statin at this point. Cardiologist said to retest in 6 months to make sure it wasn't some sort of error or fluke. He also said he didn't know enough about HRT to have an opinion, so I'm also going with my own recommendation (HA!) and my test results which show my heart is fine and shows no increased risk of cardiovascular events or stroke. Check that off.

After another wait list with a gyn who specializes in HRT, she was the first Dr to actually listen to me. Although she had never heard of Tymlos, she did have knowledge of osteoporosis and hormone therapy. Even though HRT is not prescribed in the US as a treatment for osteoporosis (it is in other countries) it is prescribed to alleviate the vasomotor symptoms. So since I never stopped having hot flashes, night sweats and insomnia she did prescribe a weekly low dose Estradiol patch at 0.025 and 100mg of bioidentical progesterone/day. I asked if I should get any hormone testing done and she said I could if I wanted to, but based on the years since menopause it wouldn't make a difference. Basically, I have next to nothing left of estrogen. She said any increased level of hormone at this point would probably be a shock to my system so let's start low and slow. She also said that after this long the HRT would not help with the osteoporosis, as in not help to increase bone growth. Even so, I'm hopeful that it will at least preserve what I have been able to add with Tymlos and at least maintain. Fingers crossed! It's only been a few days since I started so not much difference to detect yet. I am sleeping a bit sounder and not waking as often, so maybe there is progress starting??

I'll be very interested in seeing my next dexa score in 2026. Also will be an interesting conversation with my anti HRT endo when I tell her what I did. I'll probably get an office referral and detention. But I've always been a bit of a rebel.
Cheers!

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@psmnonna, I am in a similar situation to you. My 3 endos and 2 PCPs told me not to take HRT. I am 74 years old, 20 years past menopause. I took 40 mcg of Tymlos for 9 months, then Forteo for 6 months. I am now back on a half dose of Tymlos. I am very sensitive to medication. I found a functional physician who was willing to prescribe bioidentical HRT. I do not want to take Prolia or Reclast. My endos will not be happy with me when I see them in October.

I have been on Menostar, 14 mcg bioidentical estrogen for almost a month. It took me 16 days to adjust to the dizziness it caused. Then I decided to try the progesterone. She gave me 50mg of progesterone in a capsule. Since it didn't help me sleep, she gave me a compounded cream. I am trying to get used to that. I think some of my problems with progesterone are because I am still taking Tymlos. From what I've read, they appear to do the same thing. I don't have a uterus, but I did have surgery for endometriosis in the past. My functional doctor thinks that I need to balance the estrogen. Apparently, progesterone can increase osteoblasts, while estrogen decreases osteoclasts.

I hope that you get very good results with your HRT. Thanks for posting and please keep us updated.

REPLY
Profile picture for drsuefowler @drsuefowler

@psmnonna, I am in a similar situation to you. My 3 endos and 2 PCPs told me not to take HRT. I am 74 years old, 20 years past menopause. I took 40 mcg of Tymlos for 9 months, then Forteo for 6 months. I am now back on a half dose of Tymlos. I am very sensitive to medication. I found a functional physician who was willing to prescribe bioidentical HRT. I do not want to take Prolia or Reclast. My endos will not be happy with me when I see them in October.

I have been on Menostar, 14 mcg bioidentical estrogen for almost a month. It took me 16 days to adjust to the dizziness it caused. Then I decided to try the progesterone. She gave me 50mg of progesterone in a capsule. Since it didn't help me sleep, she gave me a compounded cream. I am trying to get used to that. I think some of my problems with progesterone are because I am still taking Tymlos. From what I've read, they appear to do the same thing. I don't have a uterus, but I did have surgery for endometriosis in the past. My functional doctor thinks that I need to balance the estrogen. Apparently, progesterone can increase osteoblasts, while estrogen decreases osteoclasts.

I hope that you get very good results with your HRT. Thanks for posting and please keep us updated.

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@drsuefowler, your comment about the impact of estrogen and progesterone on osteo oclasts and osteoblasts is interesting. I hadn't heard that progesterone increases osteoblasts and estrogen decreases osteoclasts but it makes sense. My naturopath physician certified by N.A. Menopause Society, said that the BHRT may give me a small amount of gain and if it did, I would need to remain on the BHRT to maintain any small gains. My REMS Echolight scan showed an increase from spine t-score -3 to -2.6 over a 10-month period. I had also been taking supplements recommended by Keith McCormick. My CTX bone turnover was reduced by 80% from 688 to 138 over an 8 month period. I began taking BHRT at 67 lin July 2024 and have so far not fractured nor taken any OP medication, I wish to avoid, though I would not refuse it if things took a severe turn for the worse. I will have another CTX next week.

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Profile picture for debbie1956 @debbie1956

@drsuefowler, your comment about the impact of estrogen and progesterone on osteo oclasts and osteoblasts is interesting. I hadn't heard that progesterone increases osteoblasts and estrogen decreases osteoclasts but it makes sense. My naturopath physician certified by N.A. Menopause Society, said that the BHRT may give me a small amount of gain and if it did, I would need to remain on the BHRT to maintain any small gains. My REMS Echolight scan showed an increase from spine t-score -3 to -2.6 over a 10-month period. I had also been taking supplements recommended by Keith McCormick. My CTX bone turnover was reduced by 80% from 688 to 138 over an 8 month period. I began taking BHRT at 67 lin July 2024 and have so far not fractured nor taken any OP medication, I wish to avoid, though I would not refuse it if things took a severe turn for the worse. I will have another CTX next week.

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@debbie1956, Those are great gains on BHRT! It would be interesting to find out what your P1NP level is. Maybe ask your naturopath to add it to your blood work? What were your REMS hip results? I had good results from Forteo and Tymlos on DEXA and TBS, but REMS showed no change.

I am seeing a functional physician while I am in Michigan, but I return to Florida next week. I have a list of N.A. Menopause Society doctors there and will check them out. It sounds like your naturopath knows what she's doing.

Thanks for posting. I am encouraged by your results.

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@drsuefowler Yes our situations are similar! It seems that once your are past the golden 10 year mark of menopause that scares most of the Drs into saying no to HRT. We both will have some explaining to do to the endos!! I'm 67 and 18 yrs post menopause. I have taken the full dose of Tymlos since starting, and still have the heart racing issue after injecting. Finally figured out to get up about an hour early, inject, then go back to sleep and that seems to work. When I wake up for the day I feel like normal instead of being sluggish for an hour to hour and a half after injecting. I sleep through that stuff.

So far no ill effects from either the bioidentical estrogen or progesterone. I have a patch for the estrogen, 0.05mg, and change it once a week. So far it's been 1 week! I still have a uterus, and still taking Tymlos for another 4ish months. If they do work together, then all the better! I had either heard on a podcast or read somewhere the same thing about effects of these hormones on the osteoclasts and osteoblasts. I kept that in the back of my mind when the gyn Dr said at this point the HRT wouldn't have any effect on my bones. I'm hoping there is a little boosting power given to Tymlos. Is your estrogen a tablet or pill? If so, maybe going to a patch would help with dizziness? Bypass the digestive system?

My progesterone is 100mg capsule. So far no effects from that either that I can tell anyway. Possibly sleeping a little sounder, but still waking a couple of times a night. Fewer night sweats, but still get them. And it only has been a week, so I'm calling it a win, kind of, so far. What is the progesterone cream you were prescribed? I'd rather have that, I think, than take the capsule. I'd prefer to avoid anything that is processed through the liver, but the cream wasn't offered, so I now have a 90 day supply of the capsule. Is it comparable to your 50mg progesterone dose, or stronger since it wasn't helping sleep?

Here's to us both getting good results and trying not to miff too many endos in the process!😂

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