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.

gravity3 | @gravity3 | Dec 5 7:18am

In reply to @grammy9 "I also meant to ask how much out of pocket did you have to pay?" + (show)

Not sure who this question is directed to but I didn't pay anything because I have original Medicare and I have a very good supplemental. Please contact Medicare and your supplemental provider, if you have one
That will help you get clear about any financial obligation you will have, if any.

grammy9 | @grammy9 | Dec 5 7:26am

In reply to @gravity3 "Not sure who this question is directed to but I didn't pay anything because I have..." + (show)

Thank you. I'm 62 and not on medicare yet. I have blue cross so I will see what they do.
Are you still on Evenity?
Have you had tymlos or forteo...before or after?
Thank you!

kmichels | @kmichels | Dec 6 10:42am

In reply to @kmichels "For those of you that are considering Evenity, here is my journey. My August 2023 DXA..." + (show)

Update…It’s been over six weeks since my 12th dose of Evenity. I’m still waiting to hear if I will get Prolia (denied by BCBS twice) or Reclast. The middle of the night aching in my hips and thighs is more intense now. Not sure what that’s all about.

sugamama23 | @sugamama23 | Dec 6 1:26pm

I have done 3 injections so far of Evenity and I have had severe headaches for 3 months now. Not good. I did not get my 4th injection because of my headaches. Not good having to take ibuporfen or tylenol every singel day. i never had this headaches

windyshores | @windyshores | Dec 6 1:38pm

In reply to @sugamama23 "I have done 3 injections so far of Evenity and I have had severe headaches for..." + (show)

@sugamama23 I am sending you a private message (upper right).

spiderplant | @spiderplant | 6 days ago

In reply to @normahorn "I was looking for another study and found these that I had saved on ReClast dosage...." + (show)

Thank you, I appreciated the information!

As my doctor said changes (studies, options) are happening all the time and he doesn't know what he'll be recommending next. But alas with time a worry too, I'll be going in next week for the standard 5 mg dose. It will be two months three weeks from the date of my last Evenity shot and I'm concerned about losing the gains I made too. (Takes forever to get in to see him or to make appointments for the infusion.)

spiderplant | @spiderplant | 6 days ago

In reply to @sugamama23 "I have done 3 injections so far of Evenity and I have had severe headaches for..." + (show)

Sorry to read this.
It's tough not knowing where we each will fall in with the data when we have any sort of treatment (not to mention none at all) and to be so vulnerable like that.

sugamama23 | @sugamama23 | 6 days ago

In reply to @spiderplant "Sorry to read this. It's tough not knowing where we each will fall in with the..." + (show)

3 months of sever headaches..never had headaches before. So tired of taking ibuporfen and tylenol

osteoresearch | @osteoresearch | 6 days ago

In reply to @sugamama23 "3 months of sever headaches..never had headaches before. So tired of taking ibuporfen and tylenol" + (show)

Have you tried really hydrating with minerals? It “might” help with the headaches if you haven’t tried it.

gravity3 | @gravity3 | 6 days ago

In reply to @spiderplant "Thank you, I appreciated the information! As my doctor said changes (studies, options) are happening all..." + (show)

It takes awhile for an appointment with my doc too but when I was coming into his office for my injections I had no problem getting in at all even on short notice. Are the nurses that booked or do you have to go to an infusion center........have you discovered yet if it presents an issue going so long between. Does your doc know about difficulty getting appointments for your Evenity ?