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.

@me49

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.

Jump to this post

Thank you me49
I am definitely going to find that video. Sounds like Dr. Jammadas’ recommendations are safe and useful. I needed this info for me and my sister. Reading some of these comments here I have learned my sister needs to still be doing something for her condition.
Her mental status issues, as you described, brain fog and depression remains the same, I cannot get her to consider a antidepressant.
I should have guessed, by your comment, you are a professional in mental health.
I am a R.N., retired, 30 years, Psychiatric nurse. I think that is why I recognized my sister’s cognitive changes as soon as I did. We had many patients with drug issues and I am quick to see problems.
I often think about people who do not have someone like you and me in the family. They are at such a disadvantage.
I appreciate communicating with a professional.
Thank you.

REPLY

I know that you will keep on advocating for your sister. Sometimes we can get overwhelmed by all the information and decisions we have to make. It's easier to just go with the recommendations than to ask questions. Best wishes for both you and your sister.

REPLY

I just found this great support group when doing research of Evenity. I am so confused and worried about starting this medication. I have read all the posts and comments on this site. Very informative but scary. I was diagnosed at age 50 with severe Osteoporosis in both my hips and osteopenia in my spine. I have had no fractures, except a stress fracture in my foot. I have been on Fosamax, Forteo, Prolia and Evista with minimal changes in my Dexa Scan results. I walk 4 miles a day and eat healthy and take numerous vitamin supplements. I have been on no medication for 6 years for my Osteoporosis. I recently went to a new Endocrinologist who said basically I was crazy for not being on any medication for 6 years. He wants to put me on Evenity. He gave me the speech on how this medication is my last resort, that there is nothing else out there for my severe Osteoporosis. If anyone in this group can give me a recommendation for an Endocrinologist in the Fort Lauderdale area I would be much appreciated. My mother also had Osteoporosis and broke both hips and had severe dementia. I am very concerned about the brain fog and other side effects others have had on this site. I am also on the Estradiol patch which is place on my stomach and the MD stated that the Evenity injection is also given there, has anyone had this combination of medications in the stomach? I appreciate all the support and answers before I start this medication ( still waiting for the Insurance to approve it).

REPLY

@pedsnurse61 until recently I hadn't heard many negatives about Evenity. I try to keep in mind that those who suffer side effects are more likely to post!

Evenity is, I believe, given in both arms, not the tummy.

The time limit has been lifted on Forteo, I read, and you could also consider Tymlos. I chose Tymlos because the dose is adjustable so I started low and ramped up.

If you were on Forteo, your bone quality may have improved even if density didn't, or at least I think about that to reassure myself.

I have 7 spinal fractures. Believe me, you want to prevent these! I was willing to endure quite a few side effects but luckily Tymlos has been more than tolerable. I guess I would say, think about the depression from being disabled, which is always a possibility for those of us with severe osteoporosis.

REPLY
@me49

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.

Jump to this post

I had severe joint aches on Evenity. I coudn't sleep and had to take Tylenol for the pain. I also had headaches and was miserable for the 5 times I went to receive the 2 injections. I also had inflammation at the injection site which was sore for several days. I think this medication is really strong and is not for everyone. I'm going back on Prolia which I was taking before which is, I believe, a milder solution for osteoporosis. He insisted that Evenity didn't cause joint pain, but joint pain is listed on their website. I, too, called AMGEN and the FDA to report the joint pain.
hsum4

hsum4

REPLY
@hsum4

I had severe joint aches on Evenity. I coudn't sleep and had to take Tylenol for the pain. I also had headaches and was miserable for the 5 times I went to receive the 2 injections. I also had inflammation at the injection site which was sore for several days. I think this medication is really strong and is not for everyone. I'm going back on Prolia which I was taking before which is, I believe, a milder solution for osteoporosis. He insisted that Evenity didn't cause joint pain, but joint pain is listed on their website. I, too, called AMGEN and the FDA to report the joint pain.
hsum4

hsum4

Jump to this post

I think bone growth may cause pain, as in "growing pains." I wonder if the strong effects of Evenity cause that kind of pain. My doc prescribed Tymlos after discussion on Evenity, which is so new. Prolia is not a strong bone-builder but is a good med to prevent loss, according to my doc. You just have to be careful when you stop it and go on something else!

Hope you got some bone growth for your time on Evenity, @hsum4!

REPLY
@pedsnurse61

I just found this great support group when doing research of Evenity. I am so confused and worried about starting this medication. I have read all the posts and comments on this site. Very informative but scary. I was diagnosed at age 50 with severe Osteoporosis in both my hips and osteopenia in my spine. I have had no fractures, except a stress fracture in my foot. I have been on Fosamax, Forteo, Prolia and Evista with minimal changes in my Dexa Scan results. I walk 4 miles a day and eat healthy and take numerous vitamin supplements. I have been on no medication for 6 years for my Osteoporosis. I recently went to a new Endocrinologist who said basically I was crazy for not being on any medication for 6 years. He wants to put me on Evenity. He gave me the speech on how this medication is my last resort, that there is nothing else out there for my severe Osteoporosis. If anyone in this group can give me a recommendation for an Endocrinologist in the Fort Lauderdale area I would be much appreciated. My mother also had Osteoporosis and broke both hips and had severe dementia. I am very concerned about the brain fog and other side effects others have had on this site. I am also on the Estradiol patch which is place on my stomach and the MD stated that the Evenity injection is also given there, has anyone had this combination of medications in the stomach? I appreciate all the support and answers before I start this medication ( still waiting for the Insurance to approve it).

Jump to this post

For what it’s worth, I do think the brain fog I experienced isn’t a common experience.
And I’m hoping I got substantial improvement- getting a scan soon to find out.

And Evenity seems to be out of your system after a month, if you decide to try it.

REPLY
@windyshores

@pedsnurse61 until recently I hadn't heard many negatives about Evenity. I try to keep in mind that those who suffer side effects are more likely to post!

Evenity is, I believe, given in both arms, not the tummy.

The time limit has been lifted on Forteo, I read, and you could also consider Tymlos. I chose Tymlos because the dose is adjustable so I started low and ramped up.

If you were on Forteo, your bone quality may have improved even if density didn't, or at least I think about that to reassure myself.

I have 7 spinal fractures. Believe me, you want to prevent these! I was willing to endure quite a few side effects but luckily Tymlos has been more than tolerable. I guess I would say, think about the depression from being disabled, which is always a possibility for those of us with severe osteoporosis.

Jump to this post

Thank you for the support and information. My concern is my Osteoporosis is in my hips and this medication ( Evenity) seems to target the spine more than the hips. I am not sure all the horrible side effects I have read about is worth it. I will ask my new Rheumatologist about Tymlos instead. Maybe I should get a second opinion before starting on Evenity. I have also read that Evenity should be given to people who have had fractures, which I have not had. As you can tell I am so confused. My new Rheumatologist didn't even mention that I would need a Cardio workup before putting me on this strong medicine, to me this is a red flag. As a retired RN this concerns me.

REPLY

This will be my last comment
There are a lot of issues with Osteoporosis and it’s treatment.
The treatment certainly is a personal and difficult decision.
In reference to Evinity, I can say for certainty the only side effect my sister had was a altered mental status with depression. She now struggles with that every day, but says for her, the treatment for Osteoporosis out weighted the risk of side effects. Some say when the drug is out of the system the side effects subside. Following the path of my sisters Tx., I’m not so sure.

My sister was an Orthopedic surgeon’s assistant and saw a lot of broken bones. Why she chose the Evenity Tx.

REPLY
@pedsnurse61

Thank you for the support and information. My concern is my Osteoporosis is in my hips and this medication ( Evenity) seems to target the spine more than the hips. I am not sure all the horrible side effects I have read about is worth it. I will ask my new Rheumatologist about Tymlos instead. Maybe I should get a second opinion before starting on Evenity. I have also read that Evenity should be given to people who have had fractures, which I have not had. As you can tell I am so confused. My new Rheumatologist didn't even mention that I would need a Cardio workup before putting me on this strong medicine, to me this is a red flag. As a retired RN this concerns me.

Jump to this post

@pedsnurse61 I have been told I can take Evenity after Tymlos, but not the other way around. I had a hard decision to make between the two. I also like that Tymlos has an adjustable dosing pen so I could start low, which I did. Evenity really "turbo charges" growth, to use a term I saw somewhere, but it is also partly (less than Prolia or bisphosphonates) anti-resorptive as well as anabolic. Tymlos and Forteo are anabolic without the risks from anti-resorptives. These were my arguments, but your situation may be different.

REPLY
Please sign in or register to post a reply.