1. < Osteoporosis & Bone Health

Need Advise - What drug to Follow Up Evenity

Posted by prehorselover @prehorselover, May 8 5:03pm

I finished my 12th injection of Evenity on March 28th. It’s the only medication I’ve taken. Doctor recommended Prolia. I told her I would do ONE only. Then Reclast, then off drugs. My goal is to be able to ride horses for the rest of my life. I was diagnosed after I broke my shoulder. I’m 66. I suspect I have good bone quality. Started HRT.

Is that a good strategy?

Can you go from Evenity to Forteo?

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

Michael Lavacot | @michaellavacot | May 10 5:28pm
In reply to @prehorselover "I’ve never taken Fosamax. My orthopedic surgeon advised against it, so I went straight to Evenity...." + (show)
@prehorselover

I’ve never taken Fosamax. My orthopedic surgeon advised against it, so I went straight to Evenity.

Then I was referred to a Rheumatologist, who is very nice, but she doesn’t use tests (bone markers) recommended by the experts I follow on Social Media. She recommended Prolia and ordered it. I can start anytime after I get a blood test for Vitamin D and something else. I don’t remember.

You recommended on your video getting a CTX text. I requested that the doctor include that in the order. The assistant had never heard of CTX. I’m hoping it’s an option. Is there another text you recommend?

I’ve been worried about the delayed length of time after ending Evenity and starting Prolia or another drug. My rheumatologist said it wasn’t a problem, but I don’t fully trust her opinion. Starting immediately makes more sense. Good for you!

Jump to this post

Fosamax would not have been the right choice at the start and going on Evenity was a much better solution. Score one for your orthopedic surgeon! But now that you have completed Evenity, Fosamax could be the best choice, but it depends on the results you have so far. In my opinion, you have two paths to follow.

1. Transition to Fosamax for two years and get a DXA scan to see how you are doing. Combined with HRT, you could be in really good shape. If you are not in good shape, you could use Evenity again or you could transition to Prolia for a few years.

or

2. Transition to Prolia for a few years to get your hip T-scores in really good shape. Then you could transition to Fosamax or Reclast.

CTX is the shorthand name. Here is a link to the Mayo Clinic information https://www.mayocliniclabs.com/test-catalog/overview/83175#Overview

Not all doctors use bone markers, but all of the doctors I follow use at least one set of bone markers. There are blood and urine markers available. Since you're in a transition period between medications, measuring CTX (or other markers) is not ideal since it will swing from low to high. Your CTX is likely still being suppressed by Evenity but will swing above your natural untreated level in the next few weeks.

It's nice to have an untreated CTX value, especially if you are considering Prolia. If you can get it now, great, but at this point, I wouldn't worry about it.

As a side note, I bet your spine scores are better than your hip scores because you ride horses. The spine is being stressed more than you hips and femur.

REPLY
1 reply
bjgrace | @bjgrace | May 11 7:54am

Hello, I have read through your chat on Evenity and HRT and am curious about HRT being started in our 60's. I am 63 and was recently diagnosed with Osteoporosis of the spine (-2.6) and Osteopenia in the hips. The reason for my diagnosis was a number of fractures in my thoracic spine which I am now at the 6 month mark for healing. The fractures came out of no where as I was always active and worked out. No underlying conditions were found. Of course, I was never offered HRT through menopause..

I have had my 4th injection with Evenity and have a call with my Endo this month. I want to understand what happens next (planning ahead) because there is so much controversy about what is required after Evenity.

I am also curious as to when it is safe for me to start working out with weights and heel drops. I have been working out with bands to get my back stronger. I do a lot of balance and training on one leg to build glute strength etc. as every bit helps.

It would be great to hear from others who have had fractures in their Thoracic spine and to know where you are in your healing and work out journey. It is a very isolating experience. I have always been very active and really hope to get back to where if I was (with taking care of course).

REPLY
2 replies
hopefullibrarian | @hopefullibrarian | May 11 12:11pm
In reply to @prehorselover "Thank you! That’s good to know about Forteo and Tymlos! I’m a test case on following..." + (show)
@prehorselover

Thank you! That’s good to know about Forteo and Tymlos!

I’m a test case on following Evenity w HRT. I’m WAY behind schedule to start a follow up drug. I have terrible insurance. And I recently jumped through a lot of hoops to switch in order to get better care. The timing is bad, because I couldn’t get an appointment with an endocrinologist until October and a DXA scan until July 3.

Meanwhile, the previous rheumatologist had ordered Prolia. Who is supposed to be delivered on Wednesday but it wasn’t. I am an able to get anyone in the rheumatologist office to return my call. It’s frustrating. I’m hoping it turns out to be a blessing in disguise!

Jump to this post

Insurance plays too big a role in our treatment decisions. I'm fortunate that my insurance approved Evenity. At this point, I'm four sets of injections in, and looking at follow-up options. Next year, if available, I'm going to continue with the same commercial insurance plan. As we all know, the drugs available on each plan can change. In an attempt to be prepared, I'll have a Plan B and even a Plan C, while desperately hoping that Plan A works out.
As an aside---For those who are on or have had Forteo or Tymlos, did you encounter any issues with coverage to complete the full 18 month to 2 year treatment? I'm sure I've seen stories of the patient contribution ($$$) changing. Has that happened to you? Has anyone been denied coverage to complete the treatment?

REPLY
awfultruth | @awfultruth | May 11 12:22pm
In reply to @prehorselover "Thank you for responding. I watched one of your videos last night. I’ve only have one..." + (show)
@prehorselover

Thank you for responding. I watched one of your videos last night. I’ve only have one DXA scan.

DXA SCAN T-scores 12/28/22
Lumbar Spine -2.5
Left Hip -3.0
Right Hip -3.1

I’m due for another. This may be a foolish choice, but I want one with TBS. I have an appointment July 3rd. I can get a regular one sooner.

I broke my shoulder 1/19/2022. My Orthopedic surgeon pointed out on my X-rays that my “bones were thin.” Six months later, after I started Evenity and HRT, there was a visual dramatic difference on the X-rays.

I suspect my bone quality is good. Just before I was officially diagnosed, I bought a yearling horse. He has knocked me down 5 times and stepped on my leg twice. I’m fine. Horse is in training now.

Jump to this post

@prehorselover Ideally we should have DXA scans before and after each year of treatment with a osteoporosis med. I realize there are insurance and money and availability issues but if possible that's what we should all do, imo. If you go from one drug to the next without knowing what the first drug did for you it will be virtually impossible to know what effect you got from each drug. If you do not know that you will not be able to know for sure what to do in the future. For example if you take Evenity for a year you need to know whether it benefited you or not because you may want to take it again in the future. If you got no help from it the first time you would probably choose a different anabolic med in the future. Conversely if you got great benefit from it the first time you might want to take it again in the future. The same goes for all the drugs. It's crazy to take these things year after year just assuming it's working for you the same as it does "on average".

REPLY
1 reply
nwyatt | @nwyatt | May 11 3:32pm
In reply to @bjgrace "Hello, I have read through your chat on Evenity and HRT and am curious about HRT..." + (show)
@bjgrace

Hello, I have read through your chat on Evenity and HRT and am curious about HRT being started in our 60's. I am 63 and was recently diagnosed with Osteoporosis of the spine (-2.6) and Osteopenia in the hips. The reason for my diagnosis was a number of fractures in my thoracic spine which I am now at the 6 month mark for healing. The fractures came out of no where as I was always active and worked out. No underlying conditions were found. Of course, I was never offered HRT through menopause..

I have had my 4th injection with Evenity and have a call with my Endo this month. I want to understand what happens next (planning ahead) because there is so much controversy about what is required after Evenity.

I am also curious as to when it is safe for me to start working out with weights and heel drops. I have been working out with bands to get my back stronger. I do a lot of balance and training on one leg to build glute strength etc. as every bit helps.

It would be great to hear from others who have had fractures in their Thoracic spine and to know where you are in your healing and work out journey. It is a very isolating experience. I have always been very active and really hope to get back to where if I was (with taking care of course).

Jump to this post

I have 4 compression fractures in my thoracic spine, the newest being 2 years ago. I had another MRI last November and they are all stable and no nerve compression. I was pretty much pain free until last year when I started Evenity. After the first injection I have had almost constant and increasing pain mid-back, tingling and burning. I've been told it's probably nerve related, either compressed in a muscle or from inflammation due to osteoarthritis. I get massages twice a week, use resistance bands to exercise my back, stretch and take Meloxicam daily which give me some relief. Unfortunately the increased pain has affected my activity level. Last Fall I was able to walk/run, play with my grandkids, do some gardening, etc. Now I walk some and do my exercises. Depressing. I only have two more Evenity injections (hoping the back pain decreases?) and then a DEXA to see if there's been improvement. I'm going back and forth between Fosamax or Reclast when I'm done.

REPLY
1 reply
bjgrace | @bjgrace | May 11 3:45pm
In reply to @nwyatt "I have 4 compression fractures in my thoracic spine, the newest being 2 years ago. I..." + (show)
@nwyatt

I have 4 compression fractures in my thoracic spine, the newest being 2 years ago. I had another MRI last November and they are all stable and no nerve compression. I was pretty much pain free until last year when I started Evenity. After the first injection I have had almost constant and increasing pain mid-back, tingling and burning. I've been told it's probably nerve related, either compressed in a muscle or from inflammation due to osteoarthritis. I get massages twice a week, use resistance bands to exercise my back, stretch and take Meloxicam daily which give me some relief. Unfortunately the increased pain has affected my activity level. Last Fall I was able to walk/run, play with my grandkids, do some gardening, etc. Now I walk some and do my exercises. Depressing. I only have two more Evenity injections (hoping the back pain decreases?) and then a DEXA to see if there's been improvement. I'm going back and forth between Fosamax or Reclast when I'm done.

Jump to this post

Thank you for sharing that. I wonder why EVENITY would make the pain worse?
My fractures were incredibly painful but I am feeling better although definitely not back to what I was.
I believe EVENITY does have a surge effect which I have read others have had as well (around the 14 day period).
Is there another option for you since EVENITY is causing so much discomfort?

REPLY
1 reply
prehorselover | @prehorselover | May 11 3:54pm
In reply to @awfultruth "@prehorselover Ideally we should have DXA scans before and after each year of treatment with a..." + (show)
@awfultruth

@prehorselover Ideally we should have DXA scans before and after each year of treatment with a osteoporosis med. I realize there are insurance and money and availability issues but if possible that's what we should all do, imo. If you go from one drug to the next without knowing what the first drug did for you it will be virtually impossible to know what effect you got from each drug. If you do not know that you will not be able to know for sure what to do in the future. For example if you take Evenity for a year you need to know whether it benefited you or not because you may want to take it again in the future. If you got no help from it the first time you would probably choose a different anabolic med in the future. Conversely if you got great benefit from it the first time you might want to take it again in the future. The same goes for all the drugs. It's crazy to take these things year after year just assuming it's working for you the same as it does "on average".

Jump to this post

Excellent point. I’m getting a DXA scan next Friday. I’ll call on Monday to see if they have a cancellation. The scanner is only available on Monday and Fridays afternoons.

Thank you!!!

REPLY
prehorselover | @prehorselover | May 11 4:05pm
In reply to @bjgrace "Hello, I have read through your chat on Evenity and HRT and am curious about HRT..." + (show)
@bjgrace

Hello, I have read through your chat on Evenity and HRT and am curious about HRT being started in our 60's. I am 63 and was recently diagnosed with Osteoporosis of the spine (-2.6) and Osteopenia in the hips. The reason for my diagnosis was a number of fractures in my thoracic spine which I am now at the 6 month mark for healing. The fractures came out of no where as I was always active and worked out. No underlying conditions were found. Of course, I was never offered HRT through menopause..

I have had my 4th injection with Evenity and have a call with my Endo this month. I want to understand what happens next (planning ahead) because there is so much controversy about what is required after Evenity.

I am also curious as to when it is safe for me to start working out with weights and heel drops. I have been working out with bands to get my back stronger. I do a lot of balance and training on one leg to build glute strength etc. as every bit helps.

It would be great to hear from others who have had fractures in their Thoracic spine and to know where you are in your healing and work out journey. It is a very isolating experience. I have always been very active and really hope to get back to where if I was (with taking care of course).

Jump to this post

You can take HRT at your age, after 60 and don’t let anybody tell you, you can’t! Stay away from pellets. The dose is too high.

I recommend watching “Menopause Barbie (Dr. Barbara Taylor) and Dr. Felice Gersh on YouTube. Also, I recommend a podcast called “confessions of a male gynecologist.” They’re all very informative. Best of luck!! My heart goes out to you!

Rapid boneless happens in the first five years or so after menopause. I’m convinced that estrogen loss is the root cause of my bone loss. It’s difficult to find a doctor to prescribe it. 75% of OB/GYN’s know. Nothing about hormones. Telehealth HRT has become big business.

REPLY
prehorselover | @prehorselover | May 11 4:22pm
In reply to @michaellavacot "Fosamax would not have been the right choice at the start and going on Evenity was..." + (show)
@michaellavacot

Fosamax would not have been the right choice at the start and going on Evenity was a much better solution. Score one for your orthopedic surgeon! But now that you have completed Evenity, Fosamax could be the best choice, but it depends on the results you have so far. In my opinion, you have two paths to follow.

1. Transition to Fosamax for two years and get a DXA scan to see how you are doing. Combined with HRT, you could be in really good shape. If you are not in good shape, you could use Evenity again or you could transition to Prolia for a few years.

or

2. Transition to Prolia for a few years to get your hip T-scores in really good shape. Then you could transition to Fosamax or Reclast.

CTX is the shorthand name. Here is a link to the Mayo Clinic information https://www.mayocliniclabs.com/test-catalog/overview/83175#Overview

Not all doctors use bone markers, but all of the doctors I follow use at least one set of bone markers. There are blood and urine markers available. Since you're in a transition period between medications, measuring CTX (or other markers) is not ideal since it will swing from low to high. Your CTX is likely still being suppressed by Evenity but will swing above your natural untreated level in the next few weeks.

It's nice to have an untreated CTX value, especially if you are considering Prolia. If you can get it now, great, but at this point, I wouldn't worry about it.

As a side note, I bet your spine scores are better than your hip scores because you ride horses. The spine is being stressed more than you hips and femur.

Jump to this post

My goal is to ride my baby horse in one to two years. More importantly, I need to be able to survive a fall. I had my last horse for 28 years. I fell off him a few times. It happens. Especially with a young horse.

I haven’t been riding much lately in the past 3 years because my last horse was nearing the end of his life and wasn’t rideable. And my current horse is too young to ride. I am at the point where I want to find a horse to ride a few days a week.

Which strategy, that you recommended, would build the most bone? I’m afraid to have more then 1 to 3 Prolia injections because of the rebound effect. That’s why I was thinking of doing ONE Prolia injection, followed by Reclast.

Is Fosamax better than Reclast AFTER Evenity?

Btw, I just started jumping rope, barefoot, with a weighted 1/4 pound rope on a cushioned wooden platform.

I’m getting a DXA scan next Friday. If I’m lucky, there will be a cancellation, so I go on Monday.

REPLY
1 reply
nwyatt | @nwyatt | May 11 5:28pm
In reply to @bjgrace "Thank you for sharing that. I wonder why EVENITY would make the pain worse? My fractures..." + (show)
@bjgrace

Thank you for sharing that. I wonder why EVENITY would make the pain worse?
My fractures were incredibly painful but I am feeling better although definitely not back to what I was.
I believe EVENITY does have a surge effect which I have read others have had as well (around the 14 day period).
Is there another option for you since EVENITY is causing so much discomfort?

Jump to this post

The first three fractures weren't painful(in fact I didn't even knowI had them), but the fourth one was somewhat. I'm not sure the pain is caused by Evenity, it's just quite a coincidence that it started a week or so after my first shot. And yes, about day 10 to 13 I have bad pain. I only have two more injections (one on Monday and the last at the beginning of June) so I'll hang in there. Just hoping the DEXA shows some improvement.

REPLY
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