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 Bones, Joints & Muscles group.

@windyshores

Sorry @patmills I reread your post and see the fractures happened after Prolia, probably because there is a know risk of fractures if Prolia is stopped without adding a new medication. Bone density drops precipitously when you stop Prolia. So now perhaps you can go on Tymlos.

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My Doctor now wants me to do Evenity for a year and then put me back on Prolia. The Evenity shots are so expensive it’s costing me $640.00 a month and Medicare covers the rest . I have stomach ulcers so I can’t take a pill form of medication for osteoporosis. Maybe she can put me on another shot instead of Prolia. I’m really frightened about taking the Evenity shots so many side effects.

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@patmills

My Doctor now wants me to do Evenity for a year and then put me back on Prolia. The Evenity shots are so expensive it’s costing me $640.00 a month and Medicare covers the rest . I have stomach ulcers so I can’t take a pill form of medication for osteoporosis. Maybe she can put me on another shot instead of Prolia. I’m really frightened about taking the Evenity shots so many side effects.

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If your income is low, Tymlos has a patient assistance program. I get mine for free. If you are interested I can give you details.
My doc won't use Prolia for me at all.

The same company- Amgen- makes both Evenity and Prolia. I am wondering if there is some pressure from Amgen for docs to prescribe Prolia to follow Evenity.

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@windyshores

First, as you have read, Evenity, Forteo and Tymlos apparently work best if used first.

I have been told that Reclast at a lower dose can be used to "lock in" gains from Tymlos but then I can take breaks as long as I am monitored. This would mean less chance of ONJ or atypical fractures. (Also the anabolics provide better bone quality, not just density, so the foundation is stronger.)

My doc may also save the second year of Tymlos OR a year of Evenity for use later if my bone loss worsens.

I agree that if one starts at, say 60, and does two years of, say Tymlos, followed by, say, Reclast (I would not do Prolia because it cannot be stopped w/out another drug) that by the time one is 67-72 or so it would seem you have run out of safe options. Meaning two years Tymlos plus 5-10 years Reclast.

I am hoping to follow McCormick's lead in doing meds (Tymlos, partial dose Reclast) and then try natural methods to maintain. When I was on cancer meds a natural approach was not wise. I have no idea if that is possible and I will do whatever is needed to avoid fractures since I have 7 in my spine.

ps We can apparently do Evenity after Tymlos or Forteo. Also the time limit of 2 years has been lifted for Forteo and it is probably it will be lifted for Tymlos as well since patients are not developing bone cancers.

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So the bisphosohonate can be given at a lower dose as a lock-in drug then. That would lessen the BRONJ risk well then, if it's dose-sensitive, which is reassuring.

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@callalloo

So the bisphosohonate can be given at a lower dose as a lock-in drug then. That would lessen the BRONJ risk well then, if it's dose-sensitive, which is reassuring.

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@callalloo I have no idea if other docs are doing that for other patients. My doc is very nervous about giving me any med. But he does seem to think that lower dose may be protective.

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@windyshores

First, as you have read, Evenity, Forteo and Tymlos apparently work best if used first.

I have been told that Reclast at a lower dose can be used to "lock in" gains from Tymlos but then I can take breaks as long as I am monitored. This would mean less chance of ONJ or atypical fractures. (Also the anabolics provide better bone quality, not just density, so the foundation is stronger.)

My doc may also save the second year of Tymlos OR a year of Evenity for use later if my bone loss worsens.

I agree that if one starts at, say 60, and does two years of, say Tymlos, followed by, say, Reclast (I would not do Prolia because it cannot be stopped w/out another drug) that by the time one is 67-72 or so it would seem you have run out of safe options. Meaning two years Tymlos plus 5-10 years Reclast.

I am hoping to follow McCormick's lead in doing meds (Tymlos, partial dose Reclast) and then try natural methods to maintain. When I was on cancer meds a natural approach was not wise. I have no idea if that is possible and I will do whatever is needed to avoid fractures since I have 7 in my spine.

ps We can apparently do Evenity after Tymlos or Forteo. Also the time limit of 2 years has been lifted for Forteo and it is probably it will be lifted for Tymlos as well since patients are not developing bone cancers.

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What did you do for pain from spine fractures? I have 3, 2 were treated with kyphoplasty, the first fracture(T12) couldn’t be treated , assuming 8 months pain is from that one. I take some pain meds but nothing relieves it.

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I chose not to do kypholasty. My doc said outcome wasn't that different. I avoid lifting, spend time in bed, take a walk every day and do tai chi. I try to accept the pain. The hard part for me is not being able to open windows or lift things. I get neuro effects like nerve pain and numbness and if I make a mistake my entire spine hurts, as well as toes, legs, arms and neck. Sympathies!
I don't take pain meds usually though if I do something that causes a problem I take tylenol or ibuprofen.

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@lee59

What did you do for pain from spine fractures? I have 3, 2 were treated with kyphoplasty, the first fracture(T12) couldn’t be treated , assuming 8 months pain is from that one. I take some pain meds but nothing relieves it.

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I had kyphoplasty at T-12 last year. No more pain from that location, just the degenerative arthritis pain in low back.

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@windyshores

If your income is low, Tymlos has a patient assistance program. I get mine for free. If you are interested I can give you details.
My doc won't use Prolia for me at all.

The same company- Amgen- makes both Evenity and Prolia. I am wondering if there is some pressure from Amgen for docs to prescribe Prolia to follow Evenity.

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I am very interested in the patient assistance for Tymlos . I would appreciate the details.
I tried to get assistance on the Prolia shot and the Evenity shot but most places I called said there was no funds available .

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@patmills

I am very interested in the patient assistance for Tymlos . I would appreciate the details.
I tried to get assistance on the Prolia shot and the Evenity shot but most places I called said there was no funds available .

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Amgen, the company that makes Evenity and Prolia, does not have a patient assistance program (though sometimes funds are available through a foundation).

Radius makes Tymlos and has the Radius Assist program. The application is on the Radius website but you need to first contact Tymlos Together. They will assign you a personal representative who can help you with the Radius Assist program.

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@windyshores

Amgen, the company that makes Evenity and Prolia, does not have a patient assistance program (though sometimes funds are available through a foundation).

Radius makes Tymlos and has the Radius Assist program. The application is on the Radius website but you need to first contact Tymlos Together. They will assign you a personal representative who can help you with the Radius Assist program.

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Thanks for the information. I will definitely look into this .

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@windyshores

@callalloo I have no idea if other docs are doing that for other patients. My doc is very nervous about giving me any med. But he does seem to think that lower dose may be protective.

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I thought, but can't swear to it, that I read that there's a school of thought that smaller doses of bisphosphonates in general work well. If I recall correctly it was a study suggesting that bisphosphonate dosage recommendations are too high. So maybe a lower dose will be fine.

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My doc is cautious due to my sensitivities. He may plan to increase the dose if I feel fine on a low dose, which I doubt will happen. If you have that study, others would benefit if you post it.

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