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 | @windyshores | Jan 18, 2023

In reply to @pami "I did not have side effects with Reclast. Drink a lot of water before your infusion." + (show)

Yes hydrate and request a slow infusion!

thehuth6 | @thehuth6 | Jan 18, 2023

In reply to @pami "I did not have side effects with Reclast. Drink a lot of water before your infusion." + (show)

So glad to hear!

Have you had any updated DEXA scans since being on Reclast?

Thanks!

pami | @pami | Jan 18, 2023

Yes. I get a Dexascan yearly since my bone density is so bad. I was at a -4.5 before Reclast. A year later my Dexascan was -4.2. After the second year my bone density was -4.1. ( This is in my spine). My doctor put me on Prolia last visit. I will probably start Forteo at my next visit. I did fall after my first Reclast injection and didn't break any bones! I attributed it to Reclast or Divine intervention.

windyshores | @windyshores | Jan 18, 2023

In reply to @pami "Yes. I get a Dexascan yearly since my bone density is so bad. I was at..." + (show)

@pami consider Tymlos!

pami | @pami | Jan 18, 2023

I am sorry you had so many fractures. I would love to try Tymlos but my insurance doesn't cover it. It covers Forteo. I read one study where Forteo and Prolia were used simultaneously and that produced the best results. I wonder if any doctors are doing that?
Are you currently on Tymlos?

windyshores | @windyshores | Jan 18, 2023

In reply to @pami "I am sorry you had so many fractures. I would love to try Tymlos but my..." + (show)

@pami I am on Tymlos, yes, and get it for free through their Assist program. I worked my way up to 7 out of 8 clicks on the pen, which you cannot do with Forteo, but many have no problems with Forteo.

pami | @pami | Jan 18, 2023

In reply to @windyshores "@Pami I am on Tymlos, yes, and get it for free through their Assist program. I..." + (show)

Thank you for the information. I will check into the Assist program!
Forteo will be quite expensive even with my insurance.

windyshores | @windyshores | Jan 19, 2023

In reply to @pami "Thank you for the information. I will check into the Assist program! Forteo will be quite..." + (show)

Call Together with Tymlos and ask about Radius Assist. They give you a personal rep to help.

ann707 | @ann707 | Jan 19, 2023

In reply to @windyshores "Yes hydrate and request a slow infusion!" + (show)

If I recall the normal infusion is around 15 minutes. My doc requested a 30 minute. Do you know why a longer infusion time is better?

me49 | @me49 | Jan 19, 2023

In reply to @gost "Leslie, thank you, thank you, thank you. I could see so clearly what was happing to..." + (show)

Hi, gost

I regret responding so late, but alot has been going on. I started Evenity in May 2022 and discontinued treatment October 2022. I had a number of side effects, but primarily fatigue, itching and brain fog. I had headaches of varying severity and muscle spasms . I would get spikes in blood pressure. I felt better after stopping the drug. I was then put on Alendronate 70mg once a week. Three days after the second dose I developed migraines with aura for the next two weeks. I have a history of these headaches, but only happens a couple of times a year, never daily. I was given a CT which did not reveal significant findings. I now have to see a neurologist. I have constant ringing in my ears. I never had that before Evenity ot Fosamax. I had hoped that following the medical protocols, I would make my health better, not worse. I called AMGEN at 1(800)772-6436 and filed an Averse Effect Report. I kept detailed records and gave the information to a nurse. She was very thorough. Be sure you have the Doctor's name ,address and phone. They ask for vial numbers and dates of injection as well. These companies need to know about any aftermarket problems. I don't know what I will do next. It depends on what the neurologist says. Right now I am just taking calcium, d3 etc. and exercising. Best wishes to all on this journey.