1. < Osteoporosis & Bone Health

My Experience on Evenity for Treating Osteoporosis

Posted by arlene7 @arlene7, Jul 7, 2020

Thought I would share for those considering or on Evenity for osteoporosis:
Afer much research and discussions with my GP and Cardiologist, I have decided to start my treatment with Evenity injections. As with all drugs, there are many side effects. My biggest concerns were stroke and heart attack. However, considering that I do no have any history for either, for me personally, the benefits outweigh the risks. As my GP said to me, "if everyone only thought about the side effects of the drugs, no one would be taking them".

I had my first injections (subcutaneously in the back of each arm) on June 30th. The nurse that administered the injections discussed the drug in depth, along with all the possibilities that may occur. She also mentioned that for all the patients that she has seen, none has had any side effects.

The injections are once a month for only one year, so I'm hoping that this works well for me and I can improve my bone density, especially in my spine, where I need it the most.

My endocronologist has also prescribed Hydrochlorthiazide for my idiopathic hypocalcemia. I have an appointment with an allergist this month to confirm whether I still have an allergy to sulfa drugs, since this drug contains sulfa. Apart from this I take D3 orally and try to obtain additional calcium through foods not supplements. Trying to walk 3-4 times a week and will begin with a few weight bearing exercises.

My journey began September, 2019 when I was diagnosed with severe osteoporosis. After waiting to see three doctors, receiving three denials from insurance company for Evenity, which took several months, I am hopefully on my way for a favorful outcome.

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

ann707 | @ann707 | Apr 4 12:57pm
In reply to @windyshores "Did he diagnose you with celiac via blood tests or biopsy? Many of us develop osteoporosis..." + (show)
@windyshores

Did he diagnose you with celiac via blood tests or biopsy?
Many of us develop osteoporosis just after menopause due to estrogen loss. My kid has celiac and we have both been GF free for 20 years. I developed osteoporosis in my early 50's. Bone loss was abrupt at menopause and then eased up until I went on cancer meds.

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I was in early menopause so they put me on hormone replacement; they did that a lot 20 years ago. It probably saved my bones. I am reasonably convinced that the celiac genes were induced by 'something' it's called epigenetic. I guess you could equate getting cancer by exposure to some environmental factor.
They did a blood test for TTG and gliaden (sic) and then sent me to a gastro guy for an endoscopy.
By the way I got an ulcer about 10 years ago and while the gastro guy was looking for that he did a biospy for celiac. He said as long as he was down there lol. He said there was no evidence of celiac at all that the villi were totally healed.

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gretch19 | @gretch19 | Apr 4 4:39pm
In reply to @bluebonnet242 "Hello all! I have been reading your comments and advice and am really appreciative I’ve found..." + (show)
@bluebonnet242

Hello all! I have been reading your comments and advice and am really appreciative I’ve found this site. I am unfortunately joining the osteoporosis club. I have no idea which medication to start on as my worst osteoporosis is in my hip and had a recent hip fracture. All of the meds are frightening. Here are my numbers:
AP Spine (L1, L3, L4) BMD - .713; T score - 3.1; Z score -1.4 Osteoporosis
Femoral neck - BMD - .578; T score - -2.4; z score -1.0 osteopenia
Total hip - BMD-.483; t score -3.8; z score -2.6 osteoporosis
I had thought to go on tymlos first and then reclast or evenity. Prolia seems to help the hip but is one of the scarier drugs. I’m 63 and thought to rebuild bone first. Any thoughts?

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I have a very similar scenario and I’m about your age. I have received four rounds of Evenity with no side effects whatsoever. However, it doesn’t appear to be working which is baffling everyone including Dr. McCormick. My first round of markers before I started the treatment was a CTX of 514 and a P1 NP of 63. After the four rounds, the CTX went down to 147 and the P1 NP went down instead of up. Anyone have anything similar to report? Evenity is supposed to build up bone not reduce it.

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1 reply
windyshores | @windyshores | Apr 4 6:02pm
In reply to @gretch19 "I have a very similar scenario and I’m about your age. I have received four rounds..." + (show)
@gretch19

I have a very similar scenario and I’m about your age. I have received four rounds of Evenity with no side effects whatsoever. However, it doesn’t appear to be working which is baffling everyone including Dr. McCormick. My first round of markers before I started the treatment was a CTX of 514 and a P1 NP of 63. After the four rounds, the CTX went down to 147 and the P1 NP went down instead of up. Anyone have anything similar to report? Evenity is supposed to build up bone not reduce it.

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@gretch19 same here. P1NP went down and is in the 30's or 40's. Before any treatment (I did Tymlos as well) it was 54. My CTX is low but actually went up from 145 to 186 in 3 months on Evenity. McCormick blamed mine on the fact that I took a half dose second and third months, but I have my doubts about that. Despite my side effects, he told me to take a full dose and test in two months. My endo said to decide based on side effects. I am not sure if we should continue or not. Anti-resorption and some mysteries about how Evenity works may make it worthwhile. My endo is the one who said there are many things we don't understand about why Evenity is so potent for bone growth.

For you, it may be that the P1NP went up the first two months and then went down. The chart on Dr. Ben Leder's video would seem to support that. In other words, we may not be able to tell if it is working from bone markers after those first months, though the CTX going down would indicate anti-resorption.

My tests were after the first month, and mid-month in the third month. Not good. Let me know what you decide to do!

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2 replies
gretch19 | @gretch19 | Apr 4 9:49pm
In reply to @windyshores "@gretch19 same here. P1NP went down and is in the 30's or 40's. Before any treatment..." + (show)
@windyshores

@gretch19 same here. P1NP went down and is in the 30's or 40's. Before any treatment (I did Tymlos as well) it was 54. My CTX is low but actually went up from 145 to 186 in 3 months on Evenity. McCormick blamed mine on the fact that I took a half dose second and third months, but I have my doubts about that. Despite my side effects, he told me to take a full dose and test in two months. My endo said to decide based on side effects. I am not sure if we should continue or not. Anti-resorption and some mysteries about how Evenity works may make it worthwhile. My endo is the one who said there are many things we don't understand about why Evenity is so potent for bone growth.

For you, it may be that the P1NP went up the first two months and then went down. The chart on Dr. Ben Leder's video would seem to support that. In other words, we may not be able to tell if it is working from bone markers after those first months, though the CTX going down would indicate anti-resorption.

My tests were after the first month, and mid-month in the third month. Not good. Let me know what you decide to do!

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Will do. Thanks for sharing

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1 reply
mayblin | @mayblin | Apr 4 10:18pm
In reply to @windyshores "@gretch19 same here. P1NP went down and is in the 30's or 40's. Before any treatment..." + (show)
@windyshores

@gretch19 same here. P1NP went down and is in the 30's or 40's. Before any treatment (I did Tymlos as well) it was 54. My CTX is low but actually went up from 145 to 186 in 3 months on Evenity. McCormick blamed mine on the fact that I took a half dose second and third months, but I have my doubts about that. Despite my side effects, he told me to take a full dose and test in two months. My endo said to decide based on side effects. I am not sure if we should continue or not. Anti-resorption and some mysteries about how Evenity works may make it worthwhile. My endo is the one who said there are many things we don't understand about why Evenity is so potent for bone growth.

For you, it may be that the P1NP went up the first two months and then went down. The chart on Dr. Ben Leder's video would seem to support that. In other words, we may not be able to tell if it is working from bone markers after those first months, though the CTX going down would indicate anti-resorption.

My tests were after the first month, and mid-month in the third month. Not good. Let me know what you decide to do!

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Hi @windy, if you don’t mind, could you share your CTX and P1NP numbers before, 1mo and 3mo after evenity? I’m very curious.

It seems like the P1NP increase peaks around 2 weeks then starts to drop and lasts about 3-4mo. But evenity’s antiresorptive affects is long as shown in CTX trend. Maybe this antiresorptive effect has a lot to do with its overall great end results?

Thanks

REPLY
windyshores | @windyshores | Apr 4 11:43pm

My doctor indicated that they don't fully know how Evenity works so well, meaning it may be more complex than bone markers would indicate.

CTX (ref. 152-858)
2/20 324 (not fasting, 10:30am, before treatment)
5/23 165 (fasting, 9:30am, after 16 months Tymlos)
7/23 186 (fasting, 9:30am, a after 18 months Tymlos)
1/24 145 (ditto, at the end of first month Evenity)
3/24 183 (ditto, middle of third month on Evenity)

P1NP (ref. 16-96)
2/20 54 (before treatment)
5/23 40 (after 19 months Tymlos)
7/23 35 (after 21 months Tymlos)
1/24 33 (at end of first month Evenity)
3/24 39 (middle of third month Evenity)

DEXA's
11/18 (mid way through cancer med)
spine -3.4 hip -3.1 femur neck -3.8

6/21 (before Tymlos, cancer meds ended 4/21)\
spine -3.7 hip -3.3 femur neck -4.1

4/23 (18 months Tymlos)
spine -2.5 hip -2.9 femur neck -3.6

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3 replies
pt109 | @pt109 | Apr 5 8:52am
In reply to @ann707 "I followed up Evenity with Reclast which I had taken before. Unfortunately, the pain in my..." + (show)
@ann707

I followed up Evenity with Reclast which I had taken before. Unfortunately, the pain in my right hand increased and within 6 weeks or so it had spread to my left. That was a year ago. My hands/wrists are better not 100% but better. I switched to actonel once a week about a month ago. It is shorter acting and if there was a problem I could discontinue it and try something else. Not sure what but so far so good but gastro problems are somewhat common.
Just a FYI I did the DEXA a year after stopping Evenity and adding Reclast

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What were the results of your DEXA scan?
I ask because I had to stop Evenity after 8 treatments as it was causing memory loss & confusion (confirmed by my osteoporosis Dr ) and will be starting Reclast in a few months. I’m hoping my bones will be in much better shape and I hope the DECA showed improvement for you

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1 reply
ann707 | @ann707 | Apr 5 9:32am
In reply to @pt109 "What were the results of your DEXA scan? I ask because I had to stop Evenity..." + (show)
@pt109

What were the results of your DEXA scan?
I ask because I had to stop Evenity after 8 treatments as it was causing memory loss & confusion (confirmed by my osteoporosis Dr ) and will be starting Reclast in a few months. I’m hoping my bones will be in much better shape and I hope the DECA showed improvement for you

Jump to this post

My spine went from -3.6 to -3.0; hips remained the same overall -1.4. The biggest gain that makes me really happy the trabecular bone score went from ~1.0 in 2020 (couldn't find the 2022) to 1.355 which is normal. TBS measures the inside of your bones. My rheumy thought it was great. If I didn't say I stopped after 9 months. The greatest gains are made in the first 6 months.

REPLY
bluebonnet242 | @bluebonnet242 | Apr 5 10:40am
In reply to @windyshores "My doctor indicated that they don't fully know how Evenity works so well, meaning it may..." + (show)
@windyshores

My doctor indicated that they don't fully know how Evenity works so well, meaning it may be more complex than bone markers would indicate.

CTX (ref. 152-858)
2/20 324 (not fasting, 10:30am, before treatment)
5/23 165 (fasting, 9:30am, after 16 months Tymlos)
7/23 186 (fasting, 9:30am, a after 18 months Tymlos)
1/24 145 (ditto, at the end of first month Evenity)
3/24 183 (ditto, middle of third month on Evenity)

P1NP (ref. 16-96)
2/20 54 (before treatment)
5/23 40 (after 19 months Tymlos)
7/23 35 (after 21 months Tymlos)
1/24 33 (at end of first month Evenity)
3/24 39 (middle of third month Evenity)

DEXA's
11/18 (mid way through cancer med)
spine -3.4 hip -3.1 femur neck -3.8

6/21 (before Tymlos, cancer meds ended 4/21)\
spine -3.7 hip -3.3 femur neck -4.1

4/23 (18 months Tymlos)
spine -2.5 hip -2.9 femur neck -3.6

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Thank you for posting your CTX, P1NP numbers. Is 9:30 the preferable time to test? I want to test before starting Tymlos but won’t be able to visit with Dr. McCormick before I start.

Thanks for posting your dexa numbers too. It looks like you had significant gains!

REPLY
1 reply
windyshores | @windyshores | Apr 5 10:58am
In reply to @bluebonnet242 "Thank you for posting your CTX, P1NP numbers. Is 9:30 the preferable time to test? I..." + (show)
@bluebonnet242

Thank you for posting your CTX, P1NP numbers. Is 9:30 the preferable time to test? I want to test before starting Tymlos but won’t be able to visit with Dr. McCormick before I start.

Thanks for posting your dexa numbers too. It looks like you had significant gains!

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7:30 is better but around here I couldn't get an appointment so I went for consistency. @bluebonnet242 Good luck!

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