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.

lee59 | @lee59 | Jun 24, 2022
In reply to @windyshores "First, as you have read, Evenity, Forteo and Tymlos apparently work best if used first. I..." + (show)
@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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1 reply
windyshores | @windyshores | Jun 24, 2022

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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haroula | @haroula | Jun 24, 2022
In reply to @lee59 "What did you do for pain from spine fractures? I have 3, 2 were treated with..." + (show)
@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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patmills | @patmills | Jun 24, 2022
In reply to @windyshores "If your income is low, Tymlos has a patient assistance program. I get mine for free...." + (show)
@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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1 reply
windyshores | @windyshores | Jun 24, 2022
In reply to @patmills "I am very interested in the patient assistance for Tymlos . I would appreciate the details...." + (show)
@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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1 reply
patmills | @patmills | Jun 24, 2022
In reply to @windyshores "Amgen, the company that makes Evenity and Prolia, does not have a patient assistance program (though..." + (show)
@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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callalloo | @callalloo | Jun 25, 2022
In reply to @windyshores "@callalloo I have no idea if other docs are doing that for other patients. My doc..." + (show)
@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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windyshores | @windyshores | Jun 25, 2022

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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bridget77 | @bridget77 | Aug 30, 2022

I have a spinal cord injury. I am 3 weeks into my treatment. I had a Reclast shot on December 31, 2021. It is still active for at least a year. Because my Osteoporosis is so bad, my Endocrinologist and Rheumatologist wanted me on both meds. I am having extreme weakness. The weakness and muscle twitches started the first day I had the injections. I want to stay on Evenity to strengthen my bones. I do not want to struggle harder than I already do to walk and get around. On the flip side, I want to have a surgery I need and I do not want to keep fracturing my bones when I fall or twist.

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1 reply
jerseygal1 | @jerseygal1 | Aug 31, 2022
In reply to @landa "I started Evenity shots in November of 21. I am due for my fourth shot in..." + (show)
@landa

I started Evenity shots in November of 21. I am due for my fourth shot in about 10 days. It is important to keep your calcium levels up while receiving Evenity Therapy. I have been counting mg. of calcium and my past blood tests show that my calcium level is too high, and my potassium level is too high. I am also on coumadin, which means I have to watch my Vitamin K. It is all so confusing to me. I have a wonderful primary who is walking me through this, but am not getting lots of information about my high levels of calcium and potassium form my endocrinologist. Very difficult. It all seems to be such a thin line to walk.

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Hi, I started Evenity shots in July of this year. I can appreciate your comment about keeping your calcium levels up. I had a wellness visit with my primary care doctor this week and the blood labs showed low calcium and parathyroid hormone flagged as High. It was more than double my previous year's level. I make an effort to eat as many high-calcium foods as I can, plus supplement. So, I'm not sure why I had those bad levels. I see my endocrinologist tomorrow and we will discuss and hopefully take whatever steps to resolve.

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