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.

pami | @pami | Jan 19, 2023

In reply to @windyshores "Call Together with Tymlos and ask about Radius Assist. They give you a personal rep to..." + (show)

Thank you for your help!

gost | @gost | Jan 20, 2023

Hello me49,
I appreciate your comment. My sister completed the 12 injections of Evenity in Nov. 2022. You were very wise to discontinue them. Sounds like you maybe someone that is going to experience reactions to most of those Osteoporosis meds. I don’t think the doctors take side effects seriously enough.
Evenity has not been on the market very long and I really believe there will be a day when they will take it off the market if the problems are reported, especially how it is effecting the brain. My sister still has a altered mental status from the drug but she was willing to sacrifice. She was too concerned about fractures, I’m just the opposite. Also, she says it’s her age, which I’m sure the professionals like to hear. I noticed what was happing to her by about the third injection.
I am shocked reading about all the different drugs being prescribed for osteoporosis. My dexascan numbers are not too bad so I am also doing VitD3 and calcium 5000.
You are also wise to watch out for your self and keep accurate information.
We are in a dilemma and we need all the best wishes we can get on this journey

gost | @gost | Jan 20, 2023

In reply to @ann707 "A question for anyone who stopped Evenity after 6 or so shots. Did you follow up..." + (show)

Ann707
Why did you stop Evenity. Any mental status changes? Someone else my recognize mental changes before you.

2121 | @leslie2121 | Jan 20, 2023

In reply to @me49 "Hi, gost I regret responding so late, but alot has been going on. I started Evenity..." + (show)

I had similar side effects with Evenity and stopped after 8 months: headaches, rash, brain fog and aches. Brain fog and depression was the worst and I reported this to Amgen. The person taking the report said no one else has ever reported these symptoms!

me49 | @me49 | Jan 20, 2023

In reply to @leslie2121 "I had similar side effects with Evenity and stopped after 8 months: headaches, rash, brain fog..." + (show)

Good morning, leslie2121,
Medical staff often dismisses symptoms for a multitude of reasons. It doesn't matter if a patient is "the only one". Attempting to shame people can camouflage a real problem with the product. Amgen is obligated to contact the FDA if they are seeing a pattern adverse reactions. Individuals can also contact the FDA on their own. Previously, I was on Actonel for almost 10 years before the FDA came out with different recommendations due to brittle bones causing fracture. I decided that I will no longer be silent about any problems I have with these medications. Thank you for taking the time to respond. Good luck to you!

ann707 | @ann707 | Jan 20, 2023

In reply to @leslie2121 "I had similar side effects with Evenity and stopped after 8 months: headaches, rash, brain fog..." + (show)

did you follow up with reclast et al to lock in the gains you did make after 8 months?

ann707 | @ann707 | Jan 20, 2023

In reply to @gost "Ann707 Why did you stop Evenity. Any mental status changes? Someone else my recognize mental changes..." + (show)

I stopped because of increasing joint pain and stiffness.

sarsarson | @sarsarson | Jan 20, 2023

In reply to @ann707 "A question for anyone who stopped Evenity after 6 or so shots. Did you follow up..." + (show)

I’m also wondering why you stopped Evenity early. I started Evenity and another medication on the same day. I’ve had a lot of side effects but it’s hard to sort out which of the new meds is responsible

me49 | @me49 | Jan 21, 2023

In reply to @gost "Hello me49, I appreciate your comment. My sister completed the 12 injections of Evenity in Nov...." + (show)

Good morning, gost,
Thank you for your reply. I think it's interesting that you were seeing cognitive changes after the third dose of Evenity. I started to take detailed notes about side effects after that third injection. I am a retired school psychologist and know the importance of tracking behaviors, and, in this case, physical changes.
I found videos on YouTube by Dr. Pradip Jamnadas who is a cardiologist. He has a video" Amazing Benefits of Vitamin K2". I am not very good at copying links, but I hope the title will help you locate his talks. His focus is obviously heart issues, but explains how K2 helps, arteries, blood pressure and bone density. Basically, K2 is needed with D3 and calcium for bone and arterial health. I hope this helps.

2121 | @leslie2121 | Jan 21, 2023

In reply to @ann707 "did you follow up with reclast et al to lock in the gains you did make..." + (show)

I did have a Reclast infusion after stopping Evenity. After some initial side effects I seem to be doing okay- still some fatigue but less than with Evenity. Seems to be getting better?