Evenity pain

Posted by jeanniebeannie54 @jeanniebeannie54, Oct 25, 2022

I have had 3 months of evenity and my left hip, thigh and buttock are so very painful I can hardly stand, lay down and not walk. Anyone experiencing horrible pain. Help.

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Profile picture for sheriv @sheriv

Susan,
I just had a long conversation with the medical assistant at my doctor and she highly suggests that I do the Evenity wth my history so I told her to go ahead and get it set up. I am legit petrified, but from what she said could happen with me not building any bone at my age, it won't be good. That scares me even more. Hope it's ok if I keep in touch. Not sure when my first shot will be yet, she has to check insurance. But, you've been so sweet responding, I just wanted to let you know. Sheri

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How did Evenity work out for you? I have my first shot in 2 days and am terrified, but since I have just gotten two more compression fractures, I'm feeling panicky.

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Profile picture for kristie2 @kristie2

My T score in my spine was -4.6 and after a year on Evenity it is now -3.3. I have had 2 doses of Prolia and will do another DEXA in August.

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That is fantastic. I’m also a -4.7 in the spine at age 54. Will be starting Evenity soon

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I developed insufficiency fractures of my sacrum last December. I had no idea I had a bone density problem. I started Evinity shots in July. Has anyone had insomnia due to hip and knee pain. Also sever dizzy spells? This has just started after shot 4.

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I have the exact pattern of pain from just the first shot (left hip, thigh and buttock). Haven't been able to talk to my endocrinologist about it yet. Sorry you are suffering.

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Profile picture for kaye115ky @kaye115ky

I developed insufficiency fractures of my sacrum last December. I had no idea I had a bone density problem. I started Evinity shots in July. Has anyone had insomnia due to hip and knee pain. Also sever dizzy spells? This has just started after shot 4.

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@kaye115ky I have insomnia from the evenity shots. One of the stated side effects. Also have the knee pain, sometimes feels like a vise grip on my knees. It isn’t constant at night, thankfully!
Had month 7 last Friday.
Will start to research what to go on after the 12 months of shots.
Bone density in early Jan 2026. Dr ideally wanted to do it earlier but unless you have them a year and a day apart insurance won’t cover it.

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I’m sorry you are having so much pain! It sounds extreme. You might want to talk to your Dr if you haven’t already. I hope you get relief.

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I suffer from the exact same symptoms; my ischial tuberosity gets exceptionally painful, such that I too have difficulty sitting in certain positions. Riding in a car is the most painful for me. At the same time, I developed extremely painful Achilles Tendonitis in the same side; left - and by end of day my entire left leg & butt are excruciating.

I am on my 6th injection, but had to sto short term for tooth extraction & healing. I figured I’ve made it halfway, so will see what the next series of shot do to me before I bow out, if I can no longer tolerate the side effects…insomnia, joint pain, headaches, alopecia…the list is endless.

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Profile picture for susanfalcon52 @susanfalcon52

Sheriv,
Someone posted on here recently about how anxiety increased their pain. I find this to be very true.
Once you get caught up in an anxiety spiral, you feel terrible, pain increases, thinking clearly is more difficult, etc.
I try to remember this, but I am a SLOW learner.
I just got Keith McComick’s book “Great Bones”.
It’s 600 pages long, but is a great reference book. I do plan to read the whole book because I want to be as knowledgeable as I can about osteoporosis and treatment. I went straight to the chapter that talks about Evenity. The results from Evenity were way better than any other drug.
Spine BMD 11-14% in first year. Hip BMD 4% in first year. He lists the common side effects as: joint and back pain, colds, headaches,and injection site reaction.
Rare side effects: cardiovascular risk, necrosis of jaw, atypical femur fractures.
I have committed to a year on Evenity and have been fortunate that my side effects are only fatigue for a day. Or so it seems.
I was happy to see that Dr McCormick also recommended bifosphonate after Evenity which is what my two doctors wanted.
Back to anxiety. When it runs away with me, I try to remember that I have dealt with more than this, that I can manage this, and then I do some breathing exercises or some yoga. I feel much better and my pain decreases.
Sorry for long messsge.

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@susanfalcon52
Hello,
I also got Dr. McCormick's book. It is amazing. He does consultations if you would like a second opinion. I had a consultation with him (out of pocket) but totally worth it. He is truly the best out there. He only prescribes meds when needed and only until necessary. I have a spine -4.8 T score, with no fractures ... a miracle. His plan for me is a 1 year of Evenity to take me out of the hole, 1 year of forte, and then a bisphosphonate for another year after that. Since my bone quality is good, I should be done by then, crossing fingers. I have not started yet, but I can't wait to start the healing. He does a lot of testing to understand what is the cause of your osteoporosis and then he treats it. So logical.. I am also starting the Onero program on Monday.

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Profile picture for kristie2 @kristie2

My T score in my spine was -4.6 and after a year on Evenity it is now -3.3. I have had 2 doses of Prolia and will do another DEXA in August.

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@kristie2
Kristie, you give me so much hope... thank you! Did you exercise or use any supplements? So happy for you...

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I have always exercised, jogging, walking, elliptical etc. along with weights. I have also been on BHRT with biote which is a pellet insertion every 3 1/2 months of estradial, testosterone mix and then progesterone tablet every night and yes I was 10 years out of menopause.
My endocrinologist was totally against it but I went with my gut and the newest research out there. Dr. Doug Lucas has great YouTube videos out there on the subject.
I take a lot of supplements such as: Calcium, Annatrol by healthy bones, Vitamin D3, Vit K2 with mk-4 &mk-7, CoQ10, Vit B12, Krill oil, Magnesium, Vit C, berberine and Citrus Bergamot

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