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.

@windyshores

Sorry if I am repeating myself , but anyone else having memory issues on Evenity, or strange dreams? My recent memories could be from COVID. Listed side effects include "confusion" and "mental changes." I don't mind any of the other side effects (joint pain, spasms, burning) but memory is important to me.

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Hey Windy. Memory is extremely important to me as well. I am a cancer survivor and know well the brain fog that accompanied chemo.
It seems everyone I know who has suffered COVID complain about memory issues. But then most of those people are also in my age group.
I forget your age. I am now 74 and it seems every year since I turned 70, I notice more memory issues.
The only time I have had strange dreams was when I was prescribed meds to quit smoking.....very psychedelic experience at first then fading as treatment continued.
Hope to hear your memory issues are not related to Evenity.

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@rjd

Hey Windy. Memory is extremely important to me as well. I am a cancer survivor and know well the brain fog that accompanied chemo.
It seems everyone I know who has suffered COVID complain about memory issues. But then most of those people are also in my age group.
I forget your age. I am now 74 and it seems every year since I turned 70, I notice more memory issues.
The only time I have had strange dreams was when I was prescribed meds to quit smoking.....very psychedelic experience at first then fading as treatment continued.
Hope to hear your memory issues are not related to Evenity.

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I am almost 73. I have had the garden variety tip of the tongue memory issues for a few years but this is different. I really think it is COVID, not the Evenity. I do think the dreams are Evenity. But I am sleeping well lately. Thanks for answering!

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Happy to learn that you are sleeping well......I am one of those who think sleep (along with physical activity and good nutrition) is good medicine for almost everything.

And hope that the suspected Evenity-related dreams might also even out/reduce as you continue your treatment. Have you considered a possible interaction between Evenity and some other medication you might be taking?

I often wonder about how one distinguishes between 'side effects' and 'interactions.' Inasmuch as most modern medical treatment involves medication, I think drug interactions might often be overlooked to explain new symptoms.

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@rjd

Happy to learn that you are sleeping well......I am one of those who think sleep (along with physical activity and good nutrition) is good medicine for almost everything.

And hope that the suspected Evenity-related dreams might also even out/reduce as you continue your treatment. Have you considered a possible interaction between Evenity and some other medication you might be taking?

I often wonder about how one distinguishes between 'side effects' and 'interactions.' Inasmuch as most modern medical treatment involves medication, I think drug interactions might often be overlooked to explain new symptoms.

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@rjd I am not on other medications. I had COVID recently which landed me in the hospital. My inflammation markers- CRP and sed rate- were very high. I just read that sclerostin is low when inflammation is present. I don't know if low sclerostin causes inflammation, but more likely the reverse. Evenity reduces sclerostin. So I am wondering if my preexisting inflammatory situation is somehow a factor in my side effects. Which may be COVID-related.

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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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Forgot to add, rheumatologist said I may want to do evenity first because it’s just once a month but I could do tymlos if I wanted. Also, I may switch to an endo since I also have hypothyroidism and wonder if my thyroid meds were too much and contributed to my osteoporosis.

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I did Tymlos first and am now doing Evenity but I am the only patient in my doc's practice doing this, and I had to pester him 🙂 I had excellent gains on Tymlos. Many docs seem to be starting with Evenity these days, but it is quite new.
As you may have read, some of us try Tymlos and if the full dose is too much, we go down to 1/4 or 1/2 dose and ramp up so our body adjusts. I did that and managed to go from 2 out of 8 "clicks" of the adjustable pen (20mcg ) to 7 (70mcg) over time. I liked that it was daily because it leaves the body quickly (half life is 1.7 hours).

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@windyshores

I did Tymlos first and am now doing Evenity but I am the only patient in my doc's practice doing this, and I had to pester him 🙂 I had excellent gains on Tymlos. Many docs seem to be starting with Evenity these days, but it is quite new.
As you may have read, some of us try Tymlos and if the full dose is too much, we go down to 1/4 or 1/2 dose and ramp up so our body adjusts. I did that and managed to go from 2 out of 8 "clicks" of the adjustable pen (20mcg ) to 7 (70mcg) over time. I liked that it was daily because it leaves the body quickly (half life is 1.7 hours).

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Thank you for the reply. I had read your comments about starting low on Tymlos and that is one of the reasons I was interested and also a bone builder. I listened to a video featuring Dr. Leder, which someone had posted, and at the very end of the video, around 58-59 minute mark, he mentioned he would not put someone with low total hip or femoral neck scores on Teriparatide because bone density doesn’t go up at all in hip or femoral neck and cortoporosity in cortical aspects increases. He said to a lesser extent Tymlos.

So, have you heard this or maybe I misheard what he said since I don’t understand any of this. He did not say what he would give, unfortunately. I am completely overwhelmed by all of this and want to make the right decision as that will affect me going forward.

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I also want to mention that when I watched Dr Leder he did not mention Tymlos, that I can remember, in the video except one little mention at the end. I have found a study that looks like Tymlos may be better than Forteo for hip. I don’t know how to correctly reference the study but found it on ncbi.nlm.nih.gov titled Differential effects of abaloparatide and teriparatide on hip cortical volumetric BMD by DXA-based 3d modeling.

If anyone reads this please let me know what you think. I really would like to try Tymlos first but don’t know what to think. My doctor doesn’t seem to care what I start with and not sure how much he really knows which is best.

Is it ok for me to post here or should I start a new discussion for those with severe hip osteoporosis?

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@bluebonnet242

I also want to mention that when I watched Dr Leder he did not mention Tymlos, that I can remember, in the video except one little mention at the end. I have found a study that looks like Tymlos may be better than Forteo for hip. I don’t know how to correctly reference the study but found it on ncbi.nlm.nih.gov titled Differential effects of abaloparatide and teriparatide on hip cortical volumetric BMD by DXA-based 3d modeling.

If anyone reads this please let me know what you think. I really would like to try Tymlos first but don’t know what to think. My doctor doesn’t seem to care what I start with and not sure how much he really knows which is best.

Is it ok for me to post here or should I start a new discussion for those with severe hip osteoporosis?

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@bluebonnet242 It's good that you posted here where many members are active and will see your post. That's the benefit of finding an existing conversation to join instead of creating a new one.

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