1. < Osteoporosis & Bone Health

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.

patwerthman | @patwerthman | Mar 30 7:10am
In reply to @amicafedele1 "I am 69 years old and am also on Evenity. I took Alendronate for many years..." + (show)
@amicafedele1

I am 69 years old and am also on Evenity. I took Alendronate for many years and it did not help from my doctor. Prior going to my endocrinologist putting me on Evenity she took 9 samples of blood, to determine that this medication would be correct for me and there was nothing else going on with me.. I am going for my 6th injection with some blood work ..and so far NO problems. I am like a puzzle to her. I have no osteoporosis in my spine,( which I was told that is the first place it starts) just in my hip, hum. I am very active doing agility, running, etc. I do beleive since my mom & grand mom had this..they gave me this wonderful gift as well.LOL
Eleni

Jump to this post

How’s the Evenity going?

REPLY
patwerthman | @patwerthman | Mar 30 7:14am

I am reading backwards and am curious to learn more about meds and results of your Evenity and journey? I see this was 2023. I’m looking for bone density improvements as 3 years not seen on alendronate along with exercise & healthy living

REPLY
patwerthman | @patwerthman | Mar 30 7:19am
In reply to @marytlemons "I have had lots of fatigue and some depression since going on Evenity. (I also reduced..." + (show)
@marytlemons

I have had lots of fatigue and some depression since going on Evenity. (I also reduced my thyroid medication which had been prescribed to me years ago for depression, but I have been on the reduced dose for quite a while now, so should not be the cause of my depression. I never had thyroid issues, it was only prescribed for the depression.) The fatigue makes it harder to exercise. I will probably be starting something new for the depression, but would love anybody’s input about having any mood or fatigue issues since starting Evenity. I sleep 10 hours and still have trouble waking up in the morning though once I’m up I’m OK. Thank you everyone for your generous postings!
Mary

Jump to this post

Oh gosh. Hope you are better with the mood changes. That scares me also

REPLY
missey | @missey | Mar 30 10:54am

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.

REPLY
mnelsonkra | @mnelsonkra | 6 days ago
In reply to @lauratys "I did 11 months of Evenity and skipped last month as I had very bad joint..." + (show)
@lauratys

I did 11 months of Evenity and skipped last month as I had very bad joint and muscle pain that I have never had. But you do need to take a med after Evenity or you get what they call a ‘rebound’ effect and may be worse than when you started. I didn’t want to do Reclast as after several months of pain from Evenity I wanted no meds but didn’t want to lose gains. I also had very small gains in hips but significant gain in spine. I tried Fosomax as bisphosphonates are recommended following Evenity. Fosomax brought on pain again so now am taking once a month Actonel. It is better for me so far. I’ve been taking it for 6 months. I hope this helps you but do something as you don’t want to lose gains you have from Evenity.

Jump to this post

I certainly understand the pain you experienced. I go in 2 days for my 9th pair of injections and each month my pain escalates. I have extreme difficulty even getting out of bed in the morning. What is worse is that I have been on opioid paid relievers since 2001 as a result of cervical spine surgery and 12 vertebral osteoporotic compression fractures and due to Evenity my pain level is at least a 9 out of 10 every single .owning until I put a heat pack on which covers my neck, shoulders, and goes all of the way down my back.
My T Score when starting Evenity was -4.2 so I am desperate to do anything which might improve my bone health even a little. My nurse tells me that the pain is a good sign because it means the treatment is working. I certainly hope so. I'm not fooling myself, not anticipating a significant change but any improvement may mean the difference between a hip fracture or not. My goal is prevention of ANY fracture in my future.
What I do not understand was your decision to stop the Evenity treatment with one pair of injections left. If you were already in pain, one more month wouldn't have made so big a difference in your pain level but the trials indicated 12 months of treatment for a reason and you cut yourself short. I do hope that you maintain your results but now you'll never know how much better your results could have been had you gone through the entire treat plan.

REPLY
1 reply
mnelsonkra | @mnelsonkra | 6 days ago

After 18 months of self injecting with Tymlos my T Score was -3.6. My score actually got worse post Tymlos because my practitioner didn't make me aware of the need to follow up with something to maintain the Tymlos treatment. Going into Evenity treatment my T Score was -4.2. The Evenity causes me severe bone and joint pain but I'm hanging in there. I'm hoping for improvement though starting at such a low point, I'm not deluding myself, I know my score will still be bad but, hopefully there will be enough improvement that I can avoid hip fracture. With Evenity I have done my own research so that I know what comes next after Evenity. I am hopeful for improvement and for the pain being caused me by Evenity to go away. I wish everyone on Evenity success. Good luck to all!

REPLY
mnelsonkra | @mnelsonkra | 6 days ago

I realize your post is old but in regard to a CTX, how would one help? Aside from being an indicator of bone loss, it will do nothing as I understand it, to improve your status. Please correct me if I'm wrong about my interpretation.

REPLY
1 reply
lauratys | @lauratys | 6 days ago
In reply to @mnelsonkra "I certainly understand the pain you experienced. I go in 2 days for my 9th pair..." + (show)
@mnelsonkra

I certainly understand the pain you experienced. I go in 2 days for my 9th pair of injections and each month my pain escalates. I have extreme difficulty even getting out of bed in the morning. What is worse is that I have been on opioid paid relievers since 2001 as a result of cervical spine surgery and 12 vertebral osteoporotic compression fractures and due to Evenity my pain level is at least a 9 out of 10 every single .owning until I put a heat pack on which covers my neck, shoulders, and goes all of the way down my back.
My T Score when starting Evenity was -4.2 so I am desperate to do anything which might improve my bone health even a little. My nurse tells me that the pain is a good sign because it means the treatment is working. I certainly hope so. I'm not fooling myself, not anticipating a significant change but any improvement may mean the difference between a hip fracture or not. My goal is prevention of ANY fracture in my future.
What I do not understand was your decision to stop the Evenity treatment with one pair of injections left. If you were already in pain, one more month wouldn't have made so big a difference in your pain level but the trials indicated 12 months of treatment for a reason and you cut yourself short. I do hope that you maintain your results but now you'll never know how much better your results could have been had you gone through the entire treat plan.

Jump to this post

Hi, I am sorry for the pain you are experiencing. Evenity is most effective building bone the first six months and then is better in helping maintain what bone has been built as I understand it. I stopped after 11 months because I had zero pain prior to Evenity and felt like I had ruined my health. Evenity took my spine numbers from -3.8 to -2.1 which was great. My medical professional advised stopping and going on an anti-resorptive which I did and still do. I do not think I shortchanged myself but I literally was unable to get dressed without quite a bit of pain and was only 66 at the time. It was unsettling to go from no pain and being quite active (skiing, hiking, biking, etc) to not being able to get dressed. I am now back to all but skiing due to a knee and a shoulder surgery (not osteoporosis related!) and am weightlifting and am diligent about food and supplements as well. I wish you the best!

REPLY
njhornung | @normahorn | 6 days ago

These graphs show the effect Of Evenity being taken for 24 months. The biggest gain is in the 1st 6 months.
REPLY
baguette | @baguette | 3 days ago
In reply to @mnelsonkra "I realize your post is old but in regard to a CTX, how would one help?..." + (show)
@mnelsonkra

I realize your post is old but in regard to a CTX, how would one help? Aside from being an indicator of bone loss, it will do nothing as I understand it, to improve your status. Please correct me if I'm wrong about my interpretation.

Jump to this post

It is helpful to test the bone markers (bone loss and bone formation) to see if you are moving in the right direction, or not improving at all. This way you don't have to wait a year or two for a dexa scan. CTX and P1NP are two of the more used markers, and can be done via blood sample.

REPLY
View MoreView Less
Please sign in or register to post a reply.