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.

mayblin | @mayblin | Apr 5 9:16pm
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

Jump to this post

Thank you so much for posting your btm numbers and Dexa results! I’m happy for you.

If I remember correctly, you cited a few days ago that evenity has effects on bone growth both during 1-6mo and during 7-12mo.

Wishing you continued success!

REPLY
birdie78 | @birdie78 | Apr 6 1:11pm

Which tests should I ask for following the full course of Eventy for 12 months. I don't think my doc is too thorough and is telling me I won't get results until a year after which seems a bit odd to me. He didn't see me for the entire year-only saw nurse for injections.

REPLY
mayblin | @mayblin | Apr 9 8:24pm
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

Jump to this post

Hi @windyshores when you get a chance, could you clarify 4/2023 through 7/2023: which month is 18mo after tymlos? There might be some misprint. Just want to clarify. Thanks

REPLY
windyshores | @windyshores | Apr 9 9:34pm

@mayblin it's approximate. I indicated tests at 16 months (May) and 18 months (July). I did a few weeks in June 2021, then started again at a low dose that Sept., and probably reached a therapeutic dose in Nov. but I don't really remember.

It doesn't matter that much, Point is, I was past the active phase of bone building with Tymlos but continued through the rest of 2023 until I started Evenity.

REPLY
1 reply
mayblin | @mayblin | Apr 9 9:40pm
In reply to @windyshores "@mayblin it's approximate. I indicated tests at 16 months (May) and 18 months (July). I did..." + (show)
@windyshores

@mayblin it's approximate. I indicated tests at 16 months (May) and 18 months (July). I did a few weeks in June 2021, then started again at a low dose that Sept., and probably reached a therapeutic dose in Nov. but I don't really remember.

It doesn't matter that much, Point is, I was past the active phase of bone building with Tymlos but continued through the rest of 2023 until I started Evenity.

Jump to this post

Thank you very much windy!

REPLY
1 reply
windyshores | @windyshores | Apr 10 8:52am
In reply to @mayblin "Thank you very much windy!" + (show)
@mayblin

Thank you very much windy!

Jump to this post

One consequence of partial dosing is uncertainty about the duration of treatment 🙂 That is one reason why I recommend people move up to a therapeutic dose as quickly as possible! There may also be insurance issues if treatment is too long (there weren't for me actually- I went slightly over 2 years total).

REPLY
gretch19 | @gretch19 | Apr 16 9:46am
In reply to @gretch19 "Will do. Thanks for sharing" + (show)
@gretch19

Will do. Thanks for sharing

Jump to this post

After seeing my osteoporosis NP, we decided that I will stay the course with Evenity and repeat the bone markers in a couple of months. She also thought that perhaps the P1NP changed during the initial month and the fact that the CTX decreases so dramatically is a sign that its doing something.

REPLY
1 reply
windyshores | @windyshores | Apr 16 11:23am
In reply to @gretch19 "After seeing my osteoporosis NP, we decided that I will stay the course with Evenity and..." + (show)
@gretch19

After seeing my osteoporosis NP, we decided that I will stay the course with Evenity and repeat the bone markers in a couple of months. She also thought that perhaps the P1NP changed during the initial month and the fact that the CTX decreases so dramatically is a sign that its doing something.

Jump to this post

I did full dose Evenity (two shots) for first month, then two months of half dose (one shot) and then 4th month was full dose (two shots). I am sorry to say that the very unusual side effect of burning, prickling, tingling all over has continued.

My goal was to do 4 months minimum. Bone markers did not show increased P1NP and CTX rose slightly, not what one would expect.

I am wondering if my previous two years on Tymlos affected the Evenity effectiveness. Who knows. I am the only patient in both my endo's offices doing Evenity after Tymlos.

There is a study on doing 6 months Evenity 6 months Reclast vs 12 months Evenity and 6 months Reclast, or something like that. I will do Reclast in 2-3 months.

REPLY
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