Side Effects of Evenity?

Posted by bradford14design @bradford14design, Nov 4 10:33am

I had my 11th injection of Evenity last week. I asked the nurse if any other patients receiving Evenity complained of side effects. He said no. I find this very hard to belive. Would love to hear from those who have experienced side effects.
Mine were mostly felt 12 days after the shots.
Foggy brain for 2-3 days
Low energy
Off balance
Sleep issues
Itchy arms- one time after shot
Red face- a few hours after the shot

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@sunny65

Dear @dollieg , I’ve checked my bone density after 5 months and it’s got worse. Not sure if this helps. My doctor wants me to finish all 12. My back pain is behind control. I am probably going to have one more and after this I must have a second opinion about counting or to go on something else. Also she told me that I can have Tymlos after finishing Evenity but every source I been reading telling me that this is not a right sequence. I have severe osteoporosis and debilitating back pain and not a lot of help from doctors, unfortunately.

Jump to this post

Is it remotely possible that it is not the Evenity causing your backpain but you somehow managed to fracture your back while on it? Has anyone suggested an x-ray?

REPLY
@normahorn

Is it remotely possible that it is not the Evenity causing your backpain but you somehow managed to fracture your back while on it? Has anyone suggested an x-ray?

Jump to this post

@sunny65 if your bone density did not improve in those first months, then you may have fractured due to osteoporosis, not Evenity. Do you think?

A friend of mine just had huge, unbelievable gains on Evenity. I wish it was doing the same thing for you!

REPLY
@daisy17

When is your next DEXA scan, to see if you made any improvements? I hope your side effects go away soon. I am debating what drugs to take for my severe osteoporosis. I can't take Tymlos or Forteo because I have parathyroid issues. So that leaves Evenity followed by Fosamax or something similar.

Jump to this post

My Endocrinologist orders the DEXA every other year and I have been going to her for the past 12 years. My last DEXA was summer of 2023. When my blood work is out of control, I see her every 3 months; when it is more stable every 6 months. If I had known then what I know now, I would have insisted on surgery to remove the parathyroid glands when I was first diagnosed with Hyperparathyroidism at age 75. It wasn't an option presented to me because of my age. The disease sucks the juice out of your bones and puts it in your blood. Could-a, should-a, would-a.

REPLY

My Endocrinologist orders the DEXA every other year and I have been going to her for the past 12 years. My last DEXA was summer of 2023. When my blood work is out of control, I see her every 3 months; and, when it is more stable, every 6 months. If I had known then what I know now, I would have insisted on surgery to remove the parathyroid glands when I was first diagnosed with Hyperparathyroidism at age 75. It wasn't an option presented to me because of my age. The disease sucks the juice out of your bones and puts it in your blood. Could-a, should-a, would-a. I had back issues (sciatica) before I was diagnosed with anything other than high blood pressure.

REPLY
@sunny65

Dear @dollieg , I’ve checked my bone density after 5 months and it’s got worse. Not sure if this helps. My doctor wants me to finish all 12. My back pain is behind control. I am probably going to have one more and after this I must have a second opinion about counting or to go on something else. Also she told me that I can have Tymlos after finishing Evenity but every source I been reading telling me that this is not a right sequence. I have severe osteoporosis and debilitating back pain and not a lot of help from doctors, unfortunately.

Jump to this post

You need to be responsible for your health care. The medical professionals nowadays are not the same as those when we were growing up and starting our own families. Listen to your body and be the final decision of any changes or decisions needed to have better health.

REPLY
@windyshores

@sunny65 if your bone density did not improve in those first months, then you may have fractured due to osteoporosis, not Evenity. Do you think?

A friend of mine just had huge, unbelievable gains on Evenity. I wish it was doing the same thing for you!

Jump to this post

Dear @windyshores , I had an x-rays and CT scans and they said that these are healed fractures.I am not sure if Evenity is the main reason for the pain. I think because fractured discs pressing on nerves and my last diagnosis was - swayback syndrome. This is like fourth different diagnosis from my pain doctor. I don’t know what to think. The pain is excruciating and never stops. Tramadol doesn’t help. I started to go to therapy. The therapist does a lot of manual work and I really started afraid that he can fracture my back even he knows my condition and is very experienced. He is trying to change my posture. This giving me a terrible muscle pain in upper back in addition to lower back pain. I am not sure how to survive all of this. It’s not easy to find a new good doctor. The wait times are 4-6 months. I been spending more and more time in the bed. It’s scary but pain prevents me from movement. I found some laser therapy for pain but not sure how much they can help. I am trying everything available and just hoping that it works. Do you advise me to finish Evenity and then go on something else? Or just stop Evenity and ask for Tymlos? My new doctor offered Tymlos after I finish all 12 months, but you’ve said and I been reading that this is not the right sequence. I am so lost. My vision getting blurred from pain. All I can do - just pray.

REPLY
@dollieg

You need to be responsible for your health care. The medical professionals nowadays are not the same as those when we were growing up and starting our own families. Listen to your body and be the final decision of any changes or decisions needed to have better health.

Jump to this post

I agree, but my last DEXA test showed spine at -5.1. I have to use some bone builder in order to somehow improve bone density. I am suspecting that there is some other bone condition which doctors overlooking. But that is just my opinion and I am not a doctor.

REPLY
@sunny65

I agree, but my last DEXA test showed spine at -5.1. I have to use some bone builder in order to somehow improve bone density. I am suspecting that there is some other bone condition which doctors overlooking. But that is just my opinion and I am not a doctor.

Jump to this post

@sunny65 fractures stabilize but I think the word "heal" is misleading. I have permanent pain and disability from mine. But it sounds like you might have something else going on. This is hard!

As I said, my friend went from severe to borderline osteoporosis on Evenity . I hope you can continue. When is your next DEXA?

I go to PT and she only does manual work but never, ever lying down. One time I had a massage lying down on my tummy and the pressing made it feel like my rib s had broken! I am not sure how much we can affect posture when the structure of the spine has changed, but we can work a little on shoulders back, neck straight and not too forward etc.

I hope you can get out of bed. I have spent a lot of time in bed too! Moving does help me at this point and I hope it helps you ultimately. So sorry for your pain.

REPLY
@dollieg

My Endocrinologist orders the DEXA every other year and I have been going to her for the past 12 years. My last DEXA was summer of 2023. When my blood work is out of control, I see her every 3 months; when it is more stable every 6 months. If I had known then what I know now, I would have insisted on surgery to remove the parathyroid glands when I was first diagnosed with Hyperparathyroidism at age 75. It wasn't an option presented to me because of my age. The disease sucks the juice out of your bones and puts it in your blood. Could-a, should-a, would-a.

Jump to this post

I have similar problems. I'm 74 years old and last year I had parathyroid surgery with an experienced surgeon, but he could only find two of my parathyroid glands, both were normal. One was encased in scar tissue and got removed along with it. The other one, he stitched in place. I just had a more extension scan at the Mayo Clinic and it found what appears to be an abnormal parathyroid, but the surgeon is concerned that removing it could jeopardize the one working gland I have, which would leave me worse off than I am now. He is suggesting I start Evenity followed by Fosamax or Reclast. I feel as though I have no easy answers.

REPLY

It appears we both are at places in our osteoporosis journeys without any real tested procedures to bring relief to our damaged bodies..

REPLY
Please sign in or register to post a reply.