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

@ccduplass I did 2 years of Tymlos. For those of us sensitive to meds, Tymlos comes in a pen with adjustable dose, with "clicks." I was able to get on Tymlos by starting at 2 clicks (full dose is 8) and moving up to let my body adjust. This helped with side effects. I got up to 6 or 7 clicks (it varied) and had excellent gains.

COVID delayed my treatment and I fractured- painful and disabling. I hope you can find a way to start meds and Tymlos might be good if you are nervous.

I am trying Evenity after Tymlos (you can't do the other way around) but may go right to "locking in" gains with Reclast. Then I can take med breaks with monitoring. It's a journey but so is fracturing!!

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Thank you so much for sharing, wishing you the best with your plan

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@ccduplass

I am supposed to start Evenity after putting off for a year to be honest, I am terrified by possible side effects, my score is at 4, I am 65, athletic, had never had a fracture and can't understand why my Doctor insists this very aggressive treatment is the way to go, my friend just started Forteo, she is my age and other than an achy body, she had not had major issues, can someone share their experience with Tymlos? I am considering it... I would welcome any thoughts, I am really terrified and don't know what to do...

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Good evening @ccduplass. I know that @windyshores has commented on her experience with Tymlos. I also did two years of Tymlos injections every day without any side effects. I don't know if I could even label this an aggressive treatment. I view it as a necessary protection from potential bone injuries because we are all living longer these days.

I was taken off HRT in 1998 because of the cancer threats. Then I forgot all about it until my mother fell and broke her hip. She never walked again and as far as I know, never tried to protect herself with any medication.

I also learned from @windyshores that it is best to take the bone-creating medications first before the bone-saving ones. Good luck to you in making this decision.

Chris

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@artscaping

Good evening @ccduplass. I know that @windyshores has commented on her experience with Tymlos. I also did two years of Tymlos injections every day without any side effects. I don't know if I could even label this an aggressive treatment. I view it as a necessary protection from potential bone injuries because we are all living longer these days.

I was taken off HRT in 1998 because of the cancer threats. Then I forgot all about it until my mother fell and broke her hip. She never walked again and as far as I know, never tried to protect herself with any medication.

I also learned from @windyshores that it is best to take the bone-creating medications first before the bone-saving ones. Good luck to you in making this decision.

Chris

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Thank you so much Chris for your comment, I think of Evenety as the aggressive approach so I am leaning toward Tymlos as my first medication.

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@gammyb

We’ve talked about going back on monthly infusions of Reclast. I’m doing my own research so not positive that will be the one yet.

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I am curious why monthly infusions. I get a Reclast infusion once a year with no side effects.

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@susanjane77

I am curious why monthly infusions. I get a Reclast infusion once a year with no side effects.

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That’s a very good question! Thank you. I’ll have to ask my doctor next week when I see her for my last Evenety shots.

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@gammyb

That’s a very good question! Thank you. I’ll have to ask my doctor next week when I see her for my last Evenety shots.

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Curious to hear her response.. please let me know. Now, I am wondering if I should have more infusions but I have been this yearly Reclast infusion with good results.

Thanks for the response and good luck!

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These drugs (Evenity and Reclast) have very different half lives and last very different amounts of time in the body.

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@susanjane77

Curious to hear her response.. please let me know. Now, I am wondering if I should have more infusions but I have been this yearly Reclast infusion with good results.

Thanks for the response and good luck!

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I see her next Wednesday so stay tuned, I’ll let you know.
And thank you!

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@gammyb

I see her next Wednesday so stay tuned, I’ll let you know.
And thank you!

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Looking forward to hearing more. Thanks

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Has anyone else had an immediate reaction after the injection? I am distinguishing that from "side effect." I had pressure/tension, very intense, in the area under the bottom of my diaphragm, probably muscle. Sort of burning. Not sure if this was an allergy or sensitivity. I am sensitive to polyethylene glycol and polysorbate 20, an ingredient in Evenity, is related to it chemically. I still have the sensation to a lesser degree.

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