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.

karmakay22 | @karmakay22 | Nov 29, 2022
In reply to @judith73 "My third injection was not as reactive as my first. The glands in my arms were..." + (show)
@judith73

My third injection was not as reactive as my first. The glands in my arms were not as swollen and red and for this I am thankful! I do continue to notice that the week after my injection finds me with decreased energy level. I am not a sedentary person so this is something I would notice. Now onward to #4!!

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Are your Evenity shots finished at this point? 11/2022? I just started and I am so so fatigued and just want to sleep! So weird!!

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1 reply
ann707 | @ann707 | Dec 1, 2022
In reply to @windyshores "I am glad that you have managed to do 8 months! Let us know what the..." + (show)
@windyshores

I am glad that you have managed to do 8 months! Let us know what the doc says. It would be helpful.

I have a lot of joint pain today but am not on Evenity 🙂

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Well my endo got back to me and essentially he said Evenity may be causing the joint issues but it may be an underlying degenerative arthritis. Well I am older so having some arthritis would not be surprising. But my question to anyone who had joint pain: did it get better or less of an issue over time, did it lessen after you finished Evenity? It's the lack of information that is maddening. I will give Amgen a call and see what they have to say but I'm not expecting much from them. I guess my real concern is that the joint pain will be permanent or take a long time to resolve.
I will be seeing a ortho guy about a sore wrist (cyst) and see what he has to say.
To be clear the joint pain isn't debilitating just sore.

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1 reply
dianestanley | @dianestanley | Dec 5, 2022
In reply to @arlene7 "Evenity is for 12 months only. Once the new scans are reviewed (after a year of..." + (show)
@arlene7

Evenity is for 12 months only. Once the new scans are reviewed (after a year of taking Evenity) the maintenance plan will then be discussed with Endocronologist.
In regards to the sulfa allgery. I had an allergic reaction to an antibiotic about 40 years ago. The Hydrochlorothiazide is a bit different than an antibiotic, so it may be ok to take, however I want to make sure before taking, that is why I have chosen to see an allergist first.

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I had a reaction to sulfa drugs that were in an antibiotic once. I believe it was for a sinus infection. However, the Evenity Drug has not given me any side effects years later. I don't know what had happened.

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1 reply
cubby718 | @cubby718 | Dec 5, 2022

Did you have a good experience with Evenity?

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1 reply
bettylb | @bettylb | Dec 5, 2022

Does anyone have pre and post Dexascan result from being on Evenity for 12 months?

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me49 | @me49 | Dec 6, 2022
In reply to @ann707 "Hello everyone just found this group. I have been taking Evenity now for 8 months. Over..." + (show)
@ann707

Hello everyone just found this group. I have been taking Evenity now for 8 months. Over the last 3 months I have experienced increased joint pain in my hands and now my feet. It started with just some stiffness in the metacarpal joint of my middle finger. Then progressed to my other metacarpals and now my fingers. There are sensitive areas in my hands and fingers. It doesn't stop me from doing anything right now but it is progressing. Since this all happened over 3 months it does concern me. So I guess I have two choices first to continue with the last 4 treatments and hope it doesn't get any worse, or discontinue treatments and hope the joint pain eventually resolves itself. Has anyone else had this type of joint pain or discontinued treatment and found the joint pain lessened or went away?

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Good morning, ann707,
I started taking Evenity in May 2002 for osteoporosis (Lumbar-2.8, Hip -2.0). I discontinued treatment after injection #6 because of side effects. Mostly, I had fatigue and brain for 2 weeks. I also had itching in arms, legs and scalp. It felt more like tiny pinches. The palms of my hands would also itch and I had pain/numbness in my fingertips. The same day I had injection 6, I had severe pain along the right side of my jaw near the ear , pressure along the left side of jaw as well as pain in the center of my chest and back. These were spasms that lasted a few seconds, but they were atypical for me and occurred a few hours after the last injection. I am happy for those who can take this drug without having serious side effects, but for me, I have to listen to my body. I was switched to Fosamx with the hope to stabilize any bone growth from the Evenity. Good luck to everyone on this journey.

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1 reply
lbmorgan44 | @lbmorgan44 | Dec 6, 2022

At age 75 I broke a bone in my leg while walking. I was placed on Evenity for a year ending October 2022. Here are my before and after DEXA scores:
Before Evista After 12 Months on Evista

Lumbar Spine -2.0 -1.3

Femoral Neck -2.7 -2.2

Total Hip -2.1 -2.1 (Unchanged)

My DEXA scores are now back in the osteopenia range and I am very please with these results.

I had 2-3 days of muscle aches and a headache with the first injection. The nurse practitioner recommended I take an antihistamine at least one hour prior to each injection. I took Zyrtec and never had any more aches/pains/headaches. I did experience intermittent discomfort at the injection site and some fatigue with each injection that lasted for about 24 hours. That was minimal compared to the pain from my broken leg bone from osteoporosis.

I do not tolerate bisphosphonates and did not want to take Prolia and have chosen to followup the Evenity with Evista. I am exercising, taking supplements and will be following up with DEXA scans at 6 months and one year to be certain that I am maintaining bone density.

Hope this information is helpful.

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dianestanley | @dianestanley | Dec 6, 2022
In reply to @dianestanley "I had a reaction to sulfa drugs that were in an antibiotic once. I believe it..." + (show)
@dianestanley

I had a reaction to sulfa drugs that were in an antibiotic once. I believe it was for a sinus infection. However, the Evenity Drug has not given me any side effects years later. I don't know what had happened.

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I need to clarify my reply from yesterday. I have just had my fourth Evenity Injection and haven't noticed any side effects. I did not have any side effects pertaining to the sulfa in the drug. So far, no reaction to the sulfa drug that I know of.

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2121 | @leslie2121 | Dec 7, 2022
In reply to @me49 "Good morning, ann707, I started taking Evenity in May 2002 for osteoporosis (Lumbar-2.8, Hip -2.0). I..." + (show)
@me49

Good morning, ann707,
I started taking Evenity in May 2002 for osteoporosis (Lumbar-2.8, Hip -2.0). I discontinued treatment after injection #6 because of side effects. Mostly, I had fatigue and brain for 2 weeks. I also had itching in arms, legs and scalp. It felt more like tiny pinches. The palms of my hands would also itch and I had pain/numbness in my fingertips. The same day I had injection 6, I had severe pain along the right side of my jaw near the ear , pressure along the left side of jaw as well as pain in the center of my chest and back. These were spasms that lasted a few seconds, but they were atypical for me and occurred a few hours after the last injection. I am happy for those who can take this drug without having serious side effects, but for me, I have to listen to my body. I was switched to Fosamx with the hope to stabilize any bone growth from the Evenity. Good luck to everyone on this journey.

Jump to this post

I developed fatigue, joint pain and brain fog, as well as ( last month) an itchy rash on my scalp & behind my ears after 8 months on Evenity.
My endocrinologist & I decided to skip a month to see if these resolved, which they did, thankfully.
I just did a reclast infusion and did well ( other than one knee swelling painfully but it resolved after a few days of icing/rest.
So hopefully this will work and will recheck dexa -scan in February.
Good Luck!

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windyshores | @windyshores | Dec 7, 2022

@me49 and @diannestanley, your DEXA scores weren't terrible to being with. I am curious if you had fractures. Did you have a hard time getting insurance coverage?

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