Anyone taken Evenity (romosozumab) for Osteoporosis?

Hello, I am so sorry for the adverse reactions you have had. I am 68 and was 66 when I started the injections. I was told probably 15 years ago I had low bone density and did not want to take medicine. Diet and exercise were not enough unfortunately. I am pleased with the increase in spine density but I too have not been happy with adverse reactions I had dealt with and I think still have some residual issues. I also have many female relatives including my mother, who is 93, and only just this year fell and had 3 spinal compression fractures. Her three sisters never broke bones nor did their mom who was almost 90 when she passed. I think you are doing the right thing with exercise and eating well! I am on that path as well! My best to you!

Thank you for your response @windyshores . I left neurosurgeon’s office very scared of the bad news he presented to me. He talked about some “flat back” syndrome and that all he can offer is pain counseling because this is going to be even worse. I was so confused that I didn’t even go to MRI ( it was set for the same day). I still don’t understand how he didn’t noticed this before? I been going to him for over 3 months. He always said that my osteoporosis is pretty severe and I just have to take medication. He didn’t have a clue about Evenity and what side effects it’s giving.He said that this is a muscular skeletal disorder. I am very skinny and my small frame being supported just by spine and some discs are very weak. I was in shock because I been in this pain just for 6 months. He advised to go to different doctor. The pain became so unbearable just this past month. I can’t sleep, my hands are shaking. I still can’t believe what is happening. We are planning to seek a second opinion. All I know that I can’t live with this pain. Tramadol along with Tylenol does not helping. My pain doctor prescribed some off label medication LDN. It’s made in specialty pharmacy.But it needs 4-8 weeks and correct dose from 0.5 mg to 4 mg. I started taking it a couple weeks ago 0.5 mg. It makes me nauseous and I afraid to throw up ( that’s I think how I got one of my fractures). I have to increase dose gradually every 2 weeks 0.5 mg. Not a lot of doctors familiar with this medication and pain doctor is only one I can talk about it. I never seen more doctors in my life and not sure if any of them ever going to figure out what’s really is going on.I am still going to do MRI that I have a new one just in case I’ll be lucky to find a new doctor who can give me a second opinion.

@sunny65 LDN is low dose naltrexone, right?

I hope you have an MRI asap to see what is causing the pain so you can decide whether it is from Evenity. I am not really clear on what happened with the neurosurgeon- you probably are not a candidate for surgery due to bone density loss. I have found that once surgeons figure out we aren't going to have surgery, they are out of the room quickly! I have had a better experience with an orthopedist who does not do surgery.

I am sorry you did not do the MRI. It seems important so as to figure out what is causing the pain and whether Evenity is a factor or cause.

If it is, there shouldn't be a problem stopping early since the anabolic phase is probably over, but you would have to do some bisphosphonate treatment afterward. Discuss with your doctor.
Do you have an endocrinologist you trust?

I usually am a canary in the mine, but Evenity gave me no side effects. I get soreness at my injection site. I prefer the shots to be given in my stomach area. I was afraid too, but more afraid of life altering fractures from osteoporosis. I have seen it. One woman couldn't ride in a car because if the car went over a bump she fractured. My aunt ended up in a wheelchair in a nursing home. My grandmother bedridden from it. My father falling and fracturing various bones making him eventually bedridden. I feel fortunate to live in a time when we have treatment choices and I decided to go with the no guts, no glory attitude. I am on my 7th Evenity injection, praying it reversed the osteoporosis. The woman at the injection clinic told me that most people do well on it.

Best wishes to you.

@sunnny65 I certainly have "flatback syndrome" https://www.medicalnewstoday.com/articles/flatback-syndrome#summary

Three out of 5 of my lumbar vertebrae are fractured as are 4 of my thoracic vertebrae. From that article it is the lumbar area that accounts for flatback syndrome. Did the neurosurgeon tell you why you have it?

I still walk and do tai chi. PT does massage only. I hope the MRI can give you answers so you can resume moving!

Dear @windyshores . I do have 5 fracture also. One in thoracic area and the others vertebrae. I did my liver MRI with contrast on Sunday ( it was my doctor’s order) and they did the spine at the same time. But a new diagnosis about my spine came before that. Just from x- rays You are right- neurosurgeons don’t like patients if they can’t have a surgery. I know that I can’t with my bone density. I am going to have another DEXA test this week. My pain is 10+ every day and this past week I am not able to go for a walk or do anything. I lost my previous osteoporosis doctor ( she was PA and offered me to go on Tymlos). I am not sure if Evenity giving me this pain. I got new doctor but she dismissed Evenity side effects and told tip finish 12 months.. I am not being able to exercise and not even walk all my body is supported only by my weak spine. I don’t have any fat and my muscles disappearing very fast. Yes, LDN is low dose of Naltrexone - I started two weeks ago at 0.5 mg and increased to 1 mg a couple days ago. I am not sure if this going to work. So far I don’t feel any difference - just increased headaches which I had from Evenity and Tramadol already. Besides LDN is blocking Tramadol. So, I stopped it. Only advice I have is to start new therapy and continue on LDN.

Can you stop the Evenity? You have a right to decline a med.

I hope you can do Tymlos !

Hugs to you!

Hi @windyshores . Just wanted to get back to you since a lot different things happened in the past three days. First my diagnosis changed again (!!!). I don’t have flat back but swayback. Which is bad too. My pain level increased. I did DEXA test after 5 months using Evenity. It’s actually worse. Spine -5.1. It was -4.8. Not sure what’s happening. The doctor telling me that my previous test was last year September but I didn’t started Evenity until July of this year.( I don’t know where I was when I started) I had to deal with serious family matters and didn’t have time to think about myself. Doctor insists to finish Evenity and then go on Tymlos.Between making a decision about quitting therapy which didn’t produce improvement and medication. I am not 100 percent convinced that Evenity giving me pain. I have fractures throughout 4 discs in my vertebrae. I don’t have any luxury to go and find totally new doctor and start it over. The pain prevents me from driving or doing much around the house. I still tried walking today with my husband and cried from pain. Tramadol gives me headaches. I try to take just 2 a day. This is obviously not enough. I am going to see new therapist next week.Not sure how much treatment he can give it to me because my osteoporosis is so severe. It’s hard to understand how my CTX went from 647 to 345 but density numbers going other way. I been taking calcium in a pill and mostly food. The 1 cup of Almond milk supposed to have 480 mg. I drink one and have one with my oatmeal and take 500 mg in a pill. Also been taking vitamin D 3000 mg. I am not sure what I am doing wrong. I don’t have a real doctor who understands and listens. I am in my mid sixties and my head is spinning from all this crazy things that happening to me.

Please comment on this. Today was the last day for the Evenity injections in the upper arm. I was taking Evenity for a year of monthly injections at the hospital. My question is what comes now? Will the MD prescribe some kind of supplement? Did you receive good results on the supplement? What is the name of it?
Thank you

I did, I started in January 2024 and right after I experienced horrible pain on my left hip, went back to my prescriber and he said it was “normal” after the fifth injection I couldn’t walk without experiencing severe pain and this time all the way to my knee. I decided to get checked somewhere else and they discovered OSTEONECROSIS IN BOTH MY HIPS!!!!!
Please if someone is having the same pls connect