Evenity….stopped after the first set of injections…

Posted by sedrake51 @sedrake51, Jan 22, 2023

Evenity was recommended by my family practice physician. I am now 71, relatively active, 5’9” BMI:19. My Ortho issues began about ten years ago when I had an horrific ATV accident. I had a T12 burst fracture and two pelvic fractures. I recovered well and then about five years ago, I had a femur fracture and forearm fracture from side-stepping. My physician wanted to place me on Fosamax. I declined based on all of my research which was incredibly negative. I decided to improve my bone issues through exercise and nutrition plus supplements. I seem to always be remiss in garnering enough protein. I significantly improved my T-scores for my Spine: -1.6 to-1.1 and the hip from -2.6 to -1.9. These were all that were measured. Then, I became remiss in adhering to my improved osteo plan for exercise and nutrition. Big mistake! My recent T-scores were spine: -1.2, hip -2.8, neck -2.2 and forearm -4.3. By the way, always use the same machine for your scans. After reviewing the new numbers, my physician recommended Evenity. Based on everything I have read, Evenity has the most success with spine and not the hip, etc. I decided to give Evenity a try. Big mistake! The hospital nurse could not have been more kind and gave me two injections into the abdomen. Lots of pain at the injection sites and minor swelling across my entire abdomen. Ugh! Barely slept. Horrible! I took Tylenol, iced the injection sites and massaged the areas which offered me some relief. I never have headaches and had a throbbing headache for three days. My shoulders ached on both sides and still do four days afterwards. Needless to say, I can assure you that I will never take another Evenity shot again! The risks significantly outweigh the benefits at least for me. I have read about positive results for several mostly with the spine improvement for which I know that they are grateful! I am beginning my previous regimen for exercise and nutrition and will keep you posted as I receive my next scan. Best to all!

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

My primary focus has been Evenity and Prolia since this was the route of my planned treatment which has been reset. Amgen chooses to use the Relative Risk Reduction to overstate the efficacy. For example, according to Amgen, studies on fracture risk in women taking Evenity has an Absolute Risk Reduction of 1,3% and an RRR 73%. Amgen chooses to market the 73% RRR making it sound as though the drug reduced reduction of spinal fractures by 73% when the drug has truly an ARR of 1.3% (dropping from 1.8% to .5%). That minimal absolute reduction in fractures is hardly worth taking a drug with such potential brutal side effects. And because Evenity is so new…who knows what the long term effects of this drug are other than what Amgen has already stated that you could have atypical femur fractures, osteonecrosis of the jaw or an increased risk of death from cardiac events. Perhaps other drug developers use the same overstatement of benefits; however, I have not reviewed them. When I agreed to Evenity, the 73% RRR sounded amazing. After my awful experience with my first injections, I dug deeper. Take a look at the Evenity website. It states “Proven to reduce spine fracture risk by 73%.” In much smaller print below this claim, it explains the actual ARR position “women receiving Evenity had fewer new spine fractures (0.5%) than women receiving placebo (1.8%).” Take a few moments to familiarize yourself with RRR and ARR. Interesting info!

REPLY
@sedrake51

My primary focus has been Evenity and Prolia since this was the route of my planned treatment which has been reset. Amgen chooses to use the Relative Risk Reduction to overstate the efficacy. For example, according to Amgen, studies on fracture risk in women taking Evenity has an Absolute Risk Reduction of 1,3% and an RRR 73%. Amgen chooses to market the 73% RRR making it sound as though the drug reduced reduction of spinal fractures by 73% when the drug has truly an ARR of 1.3% (dropping from 1.8% to .5%). That minimal absolute reduction in fractures is hardly worth taking a drug with such potential brutal side effects. And because Evenity is so new…who knows what the long term effects of this drug are other than what Amgen has already stated that you could have atypical femur fractures, osteonecrosis of the jaw or an increased risk of death from cardiac events. Perhaps other drug developers use the same overstatement of benefits; however, I have not reviewed them. When I agreed to Evenity, the 73% RRR sounded amazing. After my awful experience with my first injections, I dug deeper. Take a look at the Evenity website. It states “Proven to reduce spine fracture risk by 73%.” In much smaller print below this claim, it explains the actual ARR position “women receiving Evenity had fewer new spine fractures (0.5%) than women receiving placebo (1.8%).” Take a few moments to familiarize yourself with RRR and ARR. Interesting info!

Jump to this post

Wow, that’s quite a difference in percentages. Evenity is what my doctor wants me on also. What are you considering instead of Evenity.

REPLY
@bruceandruth1970

Wow, that’s quite a difference in percentages. Evenity is what my doctor wants me on also. What are you considering instead of Evenity.

Jump to this post

Many meds use relative risk. I am often puzzled because although relative risk shows seemingly minor changes in bone density, many osteoporosis meds do seem to bring significant improvements to DEXA scores.

The risk of femur fracture and jaw necrosis are lower with Evenity than with bisphosphonates or Prolia. I have been told by my doc that most cases of those side effects are for cancer patients with much higher doses. Cardiac risks are for those with preexisting issues, I believe. Check all this out with your doc!

REPLY
@sedrake51

My primary focus has been Evenity and Prolia since this was the route of my planned treatment which has been reset. Amgen chooses to use the Relative Risk Reduction to overstate the efficacy. For example, according to Amgen, studies on fracture risk in women taking Evenity has an Absolute Risk Reduction of 1,3% and an RRR 73%. Amgen chooses to market the 73% RRR making it sound as though the drug reduced reduction of spinal fractures by 73% when the drug has truly an ARR of 1.3% (dropping from 1.8% to .5%). That minimal absolute reduction in fractures is hardly worth taking a drug with such potential brutal side effects. And because Evenity is so new…who knows what the long term effects of this drug are other than what Amgen has already stated that you could have atypical femur fractures, osteonecrosis of the jaw or an increased risk of death from cardiac events. Perhaps other drug developers use the same overstatement of benefits; however, I have not reviewed them. When I agreed to Evenity, the 73% RRR sounded amazing. After my awful experience with my first injections, I dug deeper. Take a look at the Evenity website. It states “Proven to reduce spine fracture risk by 73%.” In much smaller print below this claim, it explains the actual ARR position “women receiving Evenity had fewer new spine fractures (0.5%) than women receiving placebo (1.8%).” Take a few moments to familiarize yourself with RRR and ARR. Interesting info!

Jump to this post

That is an important point to remember.

REPLY
@windyshores

Many meds use relative risk. I am often puzzled because although relative risk shows seemingly minor changes in bone density, many osteoporosis meds do seem to bring significant improvements to DEXA scores.

The risk of femur fracture and jaw necrosis are lower with Evenity than with bisphosphonates or Prolia. I have been told by my doc that most cases of those side effects are for cancer patients with much higher doses. Cardiac risks are for those with preexisting issues, I believe. Check all this out with your doc!

Jump to this post

Thanks for your reply. I’ve talked with my doctor. He said the risk of osteonecrosis with Evenity is low. I just don’t want to be the one in that low percentage!

REPLY
@bruceandruth1970

Wow, that’s quite a difference in percentages. Evenity is what my doctor wants me on also. What are you considering instead of Evenity.

Jump to this post

I am going to perform my due diligence in depth before agreeing to any treatment in the future. For now, I plan on more carefully adhering to my nutrition/exercise/supplements plan I was on which improved my scans in 2020. I am still not feeling like I normally do (great) since my first set of Evenity injections. Hopefully, I will be back to “me” soon. I sincerely hope that others who agree to leverage Evenity do not have the side effects that I have experienced and enjoy positive results! Evenity is just not for me.

REPLY

Thank you for your reply. I hope there is an improvement in your next scans.

REPLY

Hi again sedrake 51. Just read your post about the negative reaction to Evenity. I am trying to adhere to good diet, exercise, and supplements in the hope that they will help my Dexa scores/my bones. I shall have to rethink my options if this doesn't work. The black box warnings highly discourage Evenity. It is too bad that regardless of what we take, we have to continue for the rest of our lives. Or it regresses. Tsk.
Thank you for sharing your sufferings. It is most generous of you.

REPLY
@lashu

Hi again sedrake 51. Just read your post about the negative reaction to Evenity. I am trying to adhere to good diet, exercise, and supplements in the hope that they will help my Dexa scores/my bones. I shall have to rethink my options if this doesn't work. The black box warnings highly discourage Evenity. It is too bad that regardless of what we take, we have to continue for the rest of our lives. Or it regresses. Tsk.
Thank you for sharing your sufferings. It is most generous of you.

Jump to this post

@lashu you might want to look into the reasons for the black box warning. When compared with placebo, one study I read said that there was no increase in cardiovascular events with Evenity, but when compared with alendronate, Evenity has more. One reason might be that alendronate has a preventive effect so comparions with Evenity might make Evenity's risks look higher. Again, I read this and don't know the date or the most recent research on this. Maybe your doc can explain.

REPLY
@windyshores

@lashu you might want to look into the reasons for the black box warning. When compared with placebo, one study I read said that there was no increase in cardiovascular events with Evenity, but when compared with alendronate, Evenity has more. One reason might be that alendronate has a preventive effect so comparions with Evenity might make Evenity's risks look higher. Again, I read this and don't know the date or the most recent research on this. Maybe your doc can explain.

Jump to this post

Hi windyshores, thankyou for helping me to clarify some of the options and problems with various pharmaceutical solutions to my osteoporosis. I will consult my doctors (my GP and my Endocrinologist) about these. I might mention here that the British equivalet to our Federal office of approval will not approve Evenity yet. It persists in the black box warnings and witholds approval.

REPLY
Please sign in or register to post a reply.