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. And I would be remiss if I didn’t throw out a thank you to @windyshores, @kristie2 and the moderators of this blog.

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

Hikernurse, thank you for your post. I'm also 67 & have osteoporosis. My doctor recommended Evenity this year, but I was hesitant because I was unsure of the results & then there are the out-of-pocket costs. Your post is very helpful.

Here's my question for you: Does one take Evenity for 1 year & then switch to another medication? I don't care for the Alendronate tablets & one can only take them for so long. I have had Reclast infusions two different times with very few side effects. I also exercise, watch my weight & try to eat healthfully. Arthritis & osteoporosis are the bane of my family. I have an adult daughter headed down the same path. Just trying to make an educated decision.

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@sugarmonkeys

Hikernurse, thank you for your post. I'm also 67 & have osteoporosis. My doctor recommended Evenity this year, but I was hesitant because I was unsure of the results & then there are the out-of-pocket costs. Your post is very helpful.

Here's my question for you: Does one take Evenity for 1 year & then switch to another medication? I don't care for the Alendronate tablets & one can only take them for so long. I have had Reclast infusions two different times with very few side effects. I also exercise, watch my weight & try to eat healthfully. Arthritis & osteoporosis are the bane of my family. I have an adult daughter headed down the same path. Just trying to make an educated decision.

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My understanding right now is Evenity for 12 months and then a bisphosohonate or denosumab to lock in. the bisphonphonate can be alendronate or zoledranic acid. Right now I am at that stage. Thrilled DXAs improved. CTX is 531 but I don’t have any other test to compare that to. All other labs WNL. Vitamin D on the low side of normal at 43ng/ml so I may increase that and try to get
more protein. Trying to decide about collagen peptides also. A couple appts this week and will have a plan of attack for the next year or so. Just very fearful Prolia for
lots of reasons, many reported here. Also realize many had trouble with Evenity and I did not. Everyone is so different and I so appreciate all the sharing that goes on around here!!!

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I got my first Evenity injections on Monday, October 30. So it’s been two days. The injections were subcutaneous in the fleshy part of the back of each arm. I haven’t experienced any pain, fatigue, or headaches and frankly since I expected to experience something I’m rather surprised that I did not. The plan is for me to get a blood draw on a bimonthly basis, a few days before the injections. The blood draw is to check that my blood calcium levels remain in a normal range as Evenity draws calcium from the blood to direct to bone. I can get the blood draw in my home town but I have to travel about 2 hours from home for the injections. The infusion center where I went (Bellin Health in Wisconsin) was quite straightforward and easy for me to schedule with after they received the referral and prescription from my endocrinologist. Since Evenity is administered in a clinical setting my Medicare Part B and Supplemental Plan (Medigap) will cover the enormous cost of this medication.

I’ll update as I proceed. I am, of course, hoping to see increased bone density after the 12 months of Evenity injections and little to no adverse effects from the injections. After I complete the year on Evenity the plan is to move to another osteoporosis medication that will “lock in” the bone density.

According to my endocrinologist, since I had endometrial cancer and received radiation therapy some of the osteoporosis medications are contraindicated for me. That’s why he prescribed Evenity (I don’t have a history of cardiovascular disease or stroke) for these first 12 months.

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@naturegirl5

I got my first Evenity injections on Monday, October 30. So it’s been two days. The injections were subcutaneous in the fleshy part of the back of each arm. I haven’t experienced any pain, fatigue, or headaches and frankly since I expected to experience something I’m rather surprised that I did not. The plan is for me to get a blood draw on a bimonthly basis, a few days before the injections. The blood draw is to check that my blood calcium levels remain in a normal range as Evenity draws calcium from the blood to direct to bone. I can get the blood draw in my home town but I have to travel about 2 hours from home for the injections. The infusion center where I went (Bellin Health in Wisconsin) was quite straightforward and easy for me to schedule with after they received the referral and prescription from my endocrinologist. Since Evenity is administered in a clinical setting my Medicare Part B and Supplemental Plan (Medigap) will cover the enormous cost of this medication.

I’ll update as I proceed. I am, of course, hoping to see increased bone density after the 12 months of Evenity injections and little to no adverse effects from the injections. After I complete the year on Evenity the plan is to move to another osteoporosis medication that will “lock in” the bone density.

According to my endocrinologist, since I had endometrial cancer and received radiation therapy some of the osteoporosis medications are contraindicated for me. That’s why he prescribed Evenity (I don’t have a history of cardiovascular disease or stroke) for these first 12 months.

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Helen,
I receive my 6th injections of Evenity tomorrow. I’ve been symptom free other than some fatigue the day after the injections. That was only after the first and second injections. I guess my body adjusted to the drug.
You are not kidding about the cost - I see it on my Medicare statement- $5,000+.
Best of success on your treatment journey.

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@susanfalcon52

Helen,
I receive my 6th injections of Evenity tomorrow. I’ve been symptom free other than some fatigue the day after the injections. That was only after the first and second injections. I guess my body adjusted to the drug.
You are not kidding about the cost - I see it on my Medicare statement- $5,000+.
Best of success on your treatment journey.

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@susanfalcon52 Your experience is encouraging. I may have written my earlier post a little too soon. I woke up with a rapid heart rate this morning like I'd just been running on the treadmill or X-country skiing. It came and went over about 30 minutes and appears to be gone now. It could be related to the Evenity injections and my body is adjusting. I'll call my doctor today.

I haven't seen the cost yet. Thanks for alerting me to the sticker shock I'll see when I look at my Medicare statement.

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@naturegirl5

I got my first Evenity injections on Monday, October 30. So it’s been two days. The injections were subcutaneous in the fleshy part of the back of each arm. I haven’t experienced any pain, fatigue, or headaches and frankly since I expected to experience something I’m rather surprised that I did not. The plan is for me to get a blood draw on a bimonthly basis, a few days before the injections. The blood draw is to check that my blood calcium levels remain in a normal range as Evenity draws calcium from the blood to direct to bone. I can get the blood draw in my home town but I have to travel about 2 hours from home for the injections. The infusion center where I went (Bellin Health in Wisconsin) was quite straightforward and easy for me to schedule with after they received the referral and prescription from my endocrinologist. Since Evenity is administered in a clinical setting my Medicare Part B and Supplemental Plan (Medigap) will cover the enormous cost of this medication.

I’ll update as I proceed. I am, of course, hoping to see increased bone density after the 12 months of Evenity injections and little to no adverse effects from the injections. After I complete the year on Evenity the plan is to move to another osteoporosis medication that will “lock in” the bone density.

According to my endocrinologist, since I had endometrial cancer and received radiation therapy some of the osteoporosis medications are contraindicated for me. That’s why he prescribed Evenity (I don’t have a history of cardiovascular disease or stroke) for these first 12 months.

Jump to this post

Omg, I also had endometrial cancer with 10 1/2 weeks of radiation and resulting osteoporosis as well as malabsorption issues. I now have breast cancer and am trying to determine the best path of aromatase inhibitors (maybe none) and osteo meds. Can you please tell me what osteo meds are contraindicated by the prior endometrial cancer? Thank you so much!

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@naturegirl5

I got my first Evenity injections on Monday, October 30. So it’s been two days. The injections were subcutaneous in the fleshy part of the back of each arm. I haven’t experienced any pain, fatigue, or headaches and frankly since I expected to experience something I’m rather surprised that I did not. The plan is for me to get a blood draw on a bimonthly basis, a few days before the injections. The blood draw is to check that my blood calcium levels remain in a normal range as Evenity draws calcium from the blood to direct to bone. I can get the blood draw in my home town but I have to travel about 2 hours from home for the injections. The infusion center where I went (Bellin Health in Wisconsin) was quite straightforward and easy for me to schedule with after they received the referral and prescription from my endocrinologist. Since Evenity is administered in a clinical setting my Medicare Part B and Supplemental Plan (Medigap) will cover the enormous cost of this medication.

I’ll update as I proceed. I am, of course, hoping to see increased bone density after the 12 months of Evenity injections and little to no adverse effects from the injections. After I complete the year on Evenity the plan is to move to another osteoporosis medication that will “lock in” the bone density.

According to my endocrinologist, since I had endometrial cancer and received radiation therapy some of the osteoporosis medications are contraindicated for me. That’s why he prescribed Evenity (I don’t have a history of cardiovascular disease or stroke) for these first 12 months.

Jump to this post

I am halfway there. Just had my 6th round of injections and had to hop on a plane the day after. I don't get very dramatic side effects at all. Sometimes I might get a small rash which goes away quickly. My biggest concern is if I am getting enough or too much calcium. I think a blood draw is a good idea. One can get too much calcium as well as too little. I am trying to drink 12 ounces of milk everyday and eating cheese regularly. I had taken fosamax for years with no positive results. My spinal scores are very bad so this is my best chance to do something about my bone loss. I walk a couple of miles 5x a week and lift some light weights regularly. Fingers crossed this routine pays off for me. Medicare and my supplemental insurance cover the injections completely.

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@hikernurse

My understanding right now is Evenity for 12 months and then a bisphosohonate or denosumab to lock in. the bisphonphonate can be alendronate or zoledranic acid. Right now I am at that stage. Thrilled DXAs improved. CTX is 531 but I don’t have any other test to compare that to. All other labs WNL. Vitamin D on the low side of normal at 43ng/ml so I may increase that and try to get
more protein. Trying to decide about collagen peptides also. A couple appts this week and will have a plan of attack for the next year or so. Just very fearful Prolia for
lots of reasons, many reported here. Also realize many had trouble with Evenity and I did not. Everyone is so different and I so appreciate all the sharing that goes on around here!!!

Jump to this post

update to above post.

So it will be alendronate weekly with another DXA October 2024. And keep doing what I’ve been doing with regular exercise and calcium/Vitamin D supplements. I plan to add collagen and maybe osteo-stim a supplement I’ve looked at through Dr McCormacks website. I will have a repeat CTX in January to be sure it is coming down. Neither doc recommended or even mentioned prolia. I did ask why and they said too hard to get off and alendronate will do the job just as well. Apparently only a 1% difference in continued gains vs prolia. I did have severe osteoporosis in the low -3 s with some trauma induced fractures and it seems to be the right thing to start with an anabolic drug followed by alendronate for a few years and then a drug holiday. Best to all dealing with this disease. There is no quick fix and small gains or even staying the same are improvements. Important to keep strong with regular exercise as the supporting muscles, tendons and joints are also part of the picture, not just the DXA numbers!! Thanks again to all contributors to this site. Very valuable info for me.

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@cobb

Omg, I also had endometrial cancer with 10 1/2 weeks of radiation and resulting osteoporosis as well as malabsorption issues. I now have breast cancer and am trying to determine the best path of aromatase inhibitors (maybe none) and osteo meds. Can you please tell me what osteo meds are contraindicated by the prior endometrial cancer? Thank you so much!

Jump to this post

All I know is if you have had radiation treatment, don't use Forteo. Depending on what kind of breast cancer you have, tamoxifen (for estrogen positive) is said to help build bone. I only know this from my own experience. I wish you well. Cancer sucks.

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Following your post. I'm 67 and was just diagnosed for first time with 'severe' osteoporosis. My doctor/ endocrinologist put me on Evenity straight away. I had my first dose 2 days ago. And I too, am quite concerned about follow-up medications after one year of Evenity. And I too, do not want to go on Prolia -- too many horror stories. I will look into alendronate and hopefully that will be a good fit. I too, have been following Dr. Doug Lucas. I'm vegan, so that's a thing to work with. Next up is to read recommended book from many here "Great Bones." I went down the osteoporosis rabbit hole and bought a bunch of supplements to start taking. 🙂
Thank you for starting this "Evenity" thread. Good luck to you et al, and good luck to me.
Rachel

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