My results after 1 year of Evenity

Posted by hikernurse @hikernurse, Oct 22, 2023

I finished 12 months of Evenity in early October 2023 with thankfully zero significant side effects (a little tiredness, headache for a day or so) I am 67. My story is posted on my home page. I did maintain a good diet, exercised, walked, hopped, stomped, yoga, aqua dance, heel drops, stood on one foot whenever I could, ate prunes daily (5), eat my own L reuteri yogurt that I ferment, took algaecal plus (which only has trace strontium, not to be confused with strontium boost which I DID NOT take care for 2 grandchildren ages 2 and 4 twice a week. My point is I am pretty active. I had 4 previous separate fractures, 2 rib from hiking/biking falls and 2 wrists one from a fall off a few steps and another just weeks after my August 2022 DXA before I started meds. I was hiking in MT (mid September 2022) and turned to check on hubby and in an instant my foot hit a rock and I went down hard onto a rock. I shattered that wrist but had surgery and it healed. Started Evenity November 2022 (after covid) and after much research and medical opinions. Every morning I read the osteoporosis blogs from Mayo and have learned so much. Dr McCormicks Great Bones book is getting dog-eared.
I’m listening to Doug Lucas you tubes. We are all different but we are all trying so hard to help ourselves and really would rather not do meds but sometimes we just have to.

My bones did what Evenity said they would do. Spine went from -3.1 to -2.6 a 13.8% increase, femoral neck went from -3.3 to -3.0 a 7.5% improvement and total femur -3.0 to -2.7 a 5.4% improvement. Appointments and bloodwork in the next few days/week to see what’s next. I think I know the answer and I’m struggling. I believe it will be Prolia and I’m PANICKED about that. Concerned about time interval before starting. I will be having a CTX, not sure if that will help. I still have severe osteoporosis but the most important thing is I haven’t had a fracture!!

Any suggestions thoughts much appreciated. 

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

@nannygoat5

Do you know how long you can stay in fosamax? I’m tolerating it well (started in November/December).

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Be diligent questioning your dr. When I was 57 I broke my femur following 7-8 years of Fosamax. The gyn kept giving renewal RXs to me without stopping at 5 yrs which I believe is the current recommendation. Fast forward to age 73. I have had several broken bones of late from accidents. I am now on 4th Evenity injection. ( Have severe spine issues as well.). Ask questions

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Dexa is not the total story of bone quality. You have done everything you felt would support you and you had great gains. Feel good. Although your scores after evenity still show a 'diagnosis' of osteoporosis, the bone quality may have improved more than that. Feel your bones strenghtening. Ask alot of questions about your options after Evenity. Prolia is not the only option. Whether you finally decide that Prolia is best out of all options, feeling positive about your path forward is important.
I love the Great BOnes book too = it has helped me create a vision for healing that allows one to feel more in hopeful and in control. I also just read 'Mindful BOdy" by Ellen Langer - its a bit scientific and about the mind body unity; the power of mind to support healing.
My spine and hip were 4 when I started this path/ forearm 4.7. I have a ways to go. but I have faith I will get there.

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@missey

I was taken off Synthroid, even though I have used it for over 30 years. There is a new scientific study out that indicates when we get older 65+ we no longer need to be taking it. I have never heard of getting Synthroid As a prescription for depression or the generic! Back to the research, Synthroid can cause major bone loss Which the doctors never told me about!! Be aware to do your own studies when prescribed a new medication as they do not tell you much of anything! So disgusted with the whole field , The dismissive attitudes, the recording of any exams without being asked, which is actually illegal in Illinois! Billing of services, such as a depression screening, which I had verbally stated three times during my meeting with the doctor I opted out of it, and they billed me anyway for the third time in A row. The list goes on and on.

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I take Synthroid for low thyroid. Would love to not take it and will ask the endocrinologist about this. I don’t believe low thyroid gets better.

I did ask about the synthroid/levothyroxine causing bone loss many, many years ago and I was told at that time that has to do with taking too much. When the prescription is correct bone loss is not a problem. Since that was many years ago, when I see the endocrinologist in May, I will ask this question.

I do my own studies, but generally the final word for me with with a doctor that I trust.

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@hikernurse

I am also leaning to alendronate for those same reasons. are you taking the daily dose or 70mg weekly? Thank you for sharing

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I also belive that Actonel is an option to lock in gains. Actonel does not stay in the body long ( as opposed to some bisphosphnates) Actonel has a slighlty different side effect profile from alendronate- but we all respond differently. Please make sure to moniter the BTM primarily CTX to determine when you may need a drug holiday. I took Actonel after TYmlos and needed to pause the Actonel after only 6 weeks as I had a powerful and rapid response to the drug. Going forward if I need Actonel again, I may only need half dose to recive benefit. We are all different. Medicare does not cover Actonel - you can get it through Good RX.
Meanwhile, I too am concered about Reclast begin so powerful but I also am leanring that people can request to take a lessor dose more frequently - so that may be an option for sensitve people. I echo Chris's blessing- May you be free of suffering and the causes of suffering. May you recieve healing . D

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@willow5

I take Synthroid for low thyroid. Would love to not take it and will ask the endocrinologist about this. I don’t believe low thyroid gets better.

I did ask about the synthroid/levothyroxine causing bone loss many, many years ago and I was told at that time that has to do with taking too much. When the prescription is correct bone loss is not a problem. Since that was many years ago, when I see the endocrinologist in May, I will ask this question.

I do my own studies, but generally the final word for me with with a doctor that I trust.

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I have read the studies and spoken to my endocrinologist about getting off of Synthroid, which I have been off of for over six months. My thyroid numbers are totally stable when a person gets older we no longer need to synthroid hormone. Older doctors aren’t in sync with the new studies that have come out regarding this.

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That’s great! I’ll talk to my endocrinologist about this. One less med would make me happy! Plus, I take brand name and that’s $75 Can’t wait to see what he thinks! He’s younger, like maybe 40s or 50s, so he should be up on the latest, for sure..

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@missey

I was taken off Synthroid, even though I have used it for over 30 years. There is a new scientific study out that indicates when we get older 65+ we no longer need to be taking it. I have never heard of getting Synthroid As a prescription for depression or the generic! Back to the research, Synthroid can cause major bone loss Which the doctors never told me about!! Be aware to do your own studies when prescribed a new medication as they do not tell you much of anything! So disgusted with the whole field , The dismissive attitudes, the recording of any exams without being asked, which is actually illegal in Illinois! Billing of services, such as a depression screening, which I had verbally stated three times during my meeting with the doctor I opted out of it, and they billed me anyway for the third time in A row. The list goes on and on.

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@missey Hi, please provide a link to the study you mention showing no need for Synthroid after 65.
Up until three years ago I had never taken a thyroid medication and the numbers like the TSH did not indicate a great need for it.
I started taking Armor Thyroid when I was 72 and it was a game changer. More energy and vitality and it coincided at least with a lessoning of 40 years of food and chemical sensitivities.
The status quo in medicine is to treat the thyroid by the numbers. But before that low thyroid was treated by the symptoms. I'm combining the two.
My favorite information source on Thyroid is Alan Gaby MD. Here's a couple of older pieces by him. There are more recent updates and comments in the Townsend Letter where he had a column, which largely express the same opinion. That you've got to be informed by the symptom picture and that for many patients (but not all) thyroid meds with T3 and T4 give better symptom results than Synthroid.
https://altmedrev.com/wp-content/uploads/2019/02/v9-2-157.pdf
https://townsendletter.com/editorial-06-22-gaby-practice-guidelines-for-the-treatment-of-hypothyroidism/

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@awfultruth

@missey Hi, please provide a link to the study you mention showing no need for Synthroid after 65.
Up until three years ago I had never taken a thyroid medication and the numbers like the TSH did not indicate a great need for it.
I started taking Armor Thyroid when I was 72 and it was a game changer. More energy and vitality and it coincided at least with a lessoning of 40 years of food and chemical sensitivities.
The status quo in medicine is to treat the thyroid by the numbers. But before that low thyroid was treated by the symptoms. I'm combining the two.
My favorite information source on Thyroid is Alan Gaby MD. Here's a couple of older pieces by him. There are more recent updates and comments in the Townsend Letter where he had a column, which largely express the same opinion. That you've got to be informed by the symptom picture and that for many patients (but not all) thyroid meds with T3 and T4 give better symptom results than Synthroid.
https://altmedrev.com/wp-content/uploads/2019/02/v9-2-157.pdf
https://townsendletter.com/editorial-06-22-gaby-practice-guidelines-for-the-treatment-of-hypothyroidism/

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@naturegirl5

@hikernurse Thank you for posting this new Discussion. I will be starting Evenity within the next month. I have been active throughout my life although some of the activities I used to do at a younger age have been modified. I was diagnosed with osteoporosis about 10 years ago by my primary care physician. I finally agreed to go on Fosamax which did help to increase my bone density to the extent that I was in the osteopenia range after 4.5 years on that medication. That was in 2021 according to a bone density scan. I had an endometrial cancer recurrence in 2021 and had external pelvic radiation (and two sessions of internal brachytherapy). I experienced a sacral fracture sometime late last year that I was unaware of until it was found on a CT I had for my cancer surveillance appointments. I can say in retrospect that the sacral fracture did affect my gait and balance which I wondered about at the time. Fast forward to August, 2023 when I met with an endocrinologist to discuss the sacral fracture and what I should do next. He ordered a bone density scan and CTX blood test. When I met with the endocrinologist after those tests he said that the osteopenia looks stable (in comparison to the bone density scan I had two years ago) however with the sacral fracture he recommended that I consider taking Evenity for 12 to build bone density and then another med after that to “lock in” the bone density. This is where I believe you are right now, @hikernurse. At the “lock in” stage.

I am tracking my daily calcium to make sure I get the minimum of 1200mg. This means that I added dairy back to my diet which I’d eliminated in early 2022 based on recommendations for cancer prevention from my Integrative Medicine physician. I track my exercise and walking with my Apple Watch. At this time of the year that means walking outdoors when the weather is pleasant and the strength-based gym sessions I go to with a personal trainer. I take calcium citrate (333mg) with a meal if I figure I didn’t get enough calcium from food sources during the day. I also take 1000iu of D3 per day.

I am trying to live my best life with all this monitoring of my activity, mineral and vitamin intake and soon with starting Evenity. Your experience, @hikernurse is encouraging.

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Thank you for sharing. I have been recommended to take Evenity for 12 months and then reassess bone density. Then decide what needs to be done to “lock in” the bone improvement. I have also had radiation and wonder what your endocrinologist will recommend for you to take since you have had radiation too. You are incredible in being so strong with your many health challenges! Thanks for sharing.

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@dreams

Thank you for sharing. I have been recommended to take Evenity for 12 months and then reassess bone density. Then decide what needs to be done to “lock in” the bone improvement. I have also had radiation and wonder what your endocrinologist will recommend for you to take since you have had radiation too. You are incredible in being so strong with your many health challenges! Thanks for sharing.

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Wow. Keeping track sounds like something else I should be doing. Versus just taking the prescribed number of supplements, etc. my vitamin D levels are over 100. So clearly something is off or I’ve been over prescribed vitamin D.
Evenity is what’s suggested for me as kidney stones have existed for the past few years

Thanks to all for posting

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