Second course of Evenity after one year hiatus

Posted by dmshope @dmshope, 4 days ago

Does anyone have expereince with doing a second course of Evenity starting a one year from the end of the first course of treatment?
Evenity/Pause/Evenity

Below is a research article about this (but it is from 2019):
https://pmc.ncbi.nlm.nih.gov/articles/PMC6877701/
Evenity effectiveness will be negatively effected by taking a bisphosphante; sequencing is critical for maxium effectiveness. I need extra bone building in cortical bone.
I first took tymlos ( which was good for spine but reduced cortical bone in feet- reducing strennth and integrity of these bones ) then a brief 6 weeks of Actonel and then on to Evenity.
NOw I need to look forward as to what is next.
My priority is foot bone health ( had 8 insufficency fractures both feet - feet are primarily cortical bone ).

Taking a bisphosphante for 2-3years just to see if it might help cortical bone does not seem like a wise choice... espewcially since this will inhibit the effectiveness if I need more direct bone building. so maybe evenity again is an option.
Thank you in advance for your comments.
Healign light to you all

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@dmshope, Do you think that Tymlos made your cortical bones break? Were you taking it when you had fractures? I was on 20 mcg of Tymlos (2 clicks) when I broke the second metatarsal in my left foot just by starting out on a walk. That was 9 months ago and I still have 2 swollen toes. I have a lot of pain in my feet. The last orthopedist suggested no more tests, because they don't do anything for it anyway. I had already broken 6 other cortical bones; shoulder, wrist, hand, elbow, and 2 ankle bones.

After I broke my foot, I increased the Tymlos to 40mcg (4 clicks), I took that for 9 months, then took Forteo for 6 months and am now back on a half dose of Tymlos. I had good improvement on my DEXA and my bone markers last May. I added an estrogen patch, Menostar, 2 months ago with hopes of holding in gains and lowering my CTX further.

What kind of results have you had so far on your DEXA and bone markers. Apparently, you feel like you need to gain more strength in your feet. How are you healing and are you having any pain? I'm sorry that I can't help you with your question about a second course of Evenity. I understand how awful it is to have fractured feet and how difficult it is to heal them. I wish you the best.

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@dmshope

You raised an interesting question! The paper you linked looked at a similar sequence, with one small difference - participants received two years of Evenity (not one) at the start.

In Figure 3 of this study, after a year off Evenity (a “pause” without any follow-up medication), bone density dropped quite a bit. This loss may be explained by the sharp rebound of CTX shown in the figure. The second round of Evenity brought those gains back, but only to about the same level as after the first treatment - not much higher. So overall, from start to finish (0–48 months), the net BMD improvement was essentially similar compared with the initial two years, with the lumbar spine showing a slight additional gain.

Would you consider using a milder antiresorptive such as risedronate, raloxifene, or estrogen after the first course of Evenity to help maintain bone density before thinking about retreatment?

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Profile picture for drsuefowler @drsuefowler

@dmshope, Do you think that Tymlos made your cortical bones break? Were you taking it when you had fractures? I was on 20 mcg of Tymlos (2 clicks) when I broke the second metatarsal in my left foot just by starting out on a walk. That was 9 months ago and I still have 2 swollen toes. I have a lot of pain in my feet. The last orthopedist suggested no more tests, because they don't do anything for it anyway. I had already broken 6 other cortical bones; shoulder, wrist, hand, elbow, and 2 ankle bones.

After I broke my foot, I increased the Tymlos to 40mcg (4 clicks), I took that for 9 months, then took Forteo for 6 months and am now back on a half dose of Tymlos. I had good improvement on my DEXA and my bone markers last May. I added an estrogen patch, Menostar, 2 months ago with hopes of holding in gains and lowering my CTX further.

What kind of results have you had so far on your DEXA and bone markers. Apparently, you feel like you need to gain more strength in your feet. How are you healing and are you having any pain? I'm sorry that I can't help you with your question about a second course of Evenity. I understand how awful it is to have fractured feet and how difficult it is to heal them. I wish you the best.

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@drsuefowler
Dear One, I am so sorry for all of your fracures and struggles. Something is very imbalanced to cause this prevasive weakness. I do hope you have been to geneticist who speciallizes in bone disseases. I recommend the complete genetics test ( i think 304 diseases ) bone dysplasia panel to assess if there is a genetic component . My tests did show a gentic componement but of unknown significance. I assume you have had a complete lab reveiw to elimiante tyroid issue, inflammation, gut disease etc. This also needs to be done.
To answer your question - my 7/8 foot fracture happend 3 months into my treatment with tymlos: I do not think the medication contributed to that fracture. Tylmos becomes more resportive ( dissolves bone/ cortical thinning) later in the treatment cycle. Many people are not effected but I was and cortical bone was reduced - ie foot weakness. I was on tymlos too long. Now Forteo is more aggressive than tymlos in its effect on cortical bone so I would question the doctors theory as to why you are on that Evenity is better with cortical bone building so that may be an option for you . Please read Great Bones by McCormick - it will help you understand and give hope.
BLessings

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Profile picture for mayblin @mayblin

@dmshope

You raised an interesting question! The paper you linked looked at a similar sequence, with one small difference - participants received two years of Evenity (not one) at the start.

In Figure 3 of this study, after a year off Evenity (a “pause” without any follow-up medication), bone density dropped quite a bit. This loss may be explained by the sharp rebound of CTX shown in the figure. The second round of Evenity brought those gains back, but only to about the same level as after the first treatment - not much higher. So overall, from start to finish (0–48 months), the net BMD improvement was essentially similar compared with the initial two years, with the lumbar spine showing a slight additional gain.

Would you consider using a milder antiresorptive such as risedronate, raloxifene, or estrogen after the first course of Evenity to help maintain bone density before thinking about retreatment?

Jump to this post

@mayblin Thank you for taking the time to read the report. I am very good an highly technical research - I just read the conclusions...
That said, I am very repsonsive and was on Actonel ( after tymlos) for only 6 weeks; it did the work it needed to do - CTX plummeted to 81. But,but I had serious side effects; acute phase reaction/ servere sinus infection/ eye pain inflammation/ systemic inflammation ( my scores skyrocketed) terrible hive type itching ( it took almost 2 months for that to resolve).
Evista was a possible choice and will be considered in future. I am not sure on estrogen - my docs are not keen on that . My concern of course is to build as best I can now and to not to blunt my chance of maximum effectiveness of a bone build med later if I need it....

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Profile picture for dmshope @dmshope

@drsuefowler
Dear One, I am so sorry for all of your fracures and struggles. Something is very imbalanced to cause this prevasive weakness. I do hope you have been to geneticist who speciallizes in bone disseases. I recommend the complete genetics test ( i think 304 diseases ) bone dysplasia panel to assess if there is a genetic component . My tests did show a gentic componement but of unknown significance. I assume you have had a complete lab reveiw to elimiante tyroid issue, inflammation, gut disease etc. This also needs to be done.
To answer your question - my 7/8 foot fracture happend 3 months into my treatment with tymlos: I do not think the medication contributed to that fracture. Tylmos becomes more resportive ( dissolves bone/ cortical thinning) later in the treatment cycle. Many people are not effected but I was and cortical bone was reduced - ie foot weakness. I was on tymlos too long. Now Forteo is more aggressive than tymlos in its effect on cortical bone so I would question the doctors theory as to why you are on that Evenity is better with cortical bone building so that may be an option for you . Please read Great Bones by McCormick - it will help you understand and give hope.
BLessings

Jump to this post

@dmshope, Thanks for your suggestion about genetics. That is one thing I haven't checked into. I would consider Evenity, but with my sensitivities, I am afraid to take either Prolia or Reclast to hold in gains. I will be needing dental work in the future, which can't be done on those medications. I am hoping that estrogen will work for that. Let us know if you decide on a second course of Evenity. Feet are inportant!

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Evenity must be followed up with a antirepostive but there are milder meds available.I am very very sentsitve and could not tolerate Prolia or Reclast ( unless maybe at 1/4 strength ) . SO my options are Actonel ( which causes problesm for me) Evista. Both of donet stay in the body long. However with your history , see a geneticist and read Great Bones.

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