Anyone taken Evenity (romosozumab) for Osteoporosis?

Thank you for your reply!
I see my endocrinologist this week and I already asked her if I could pay out of pocket and have another Dexa scan to see if it has helped at all but she said no.
I know she’s going to want me to try a different drug but they all list headaches as one of the side effects so I don’t even want to risk it.

@lynn3 Sorry you are having such a reaction to Evenity. That kind of pain does indeed demand some kind of action and a change in course. As @windyshores has suggested another DXA could be a good idea. It might help you decide what the next step should be.
Your score could have gone up or down or stayed the same.
If you've had no gains or even lost bone density then maybe there is no urgent need for a follow up med? You would have had no gains to try to "lock-in and save".
If you've had modest gains like 5-10% increase that could give you some motivation to try a follow up med. Let's keep those gains even though modest.
If you've had good gains like 11% or 15% or 20% you might say, my goodness I want to keep those gains I'll do a follow up med, yes.

I do not know why your endo said "no" but I suggest you have another doc say "yes" as there is no harm at all and plenty to gain in getting another DXA at this point. If possible have the second DXA on the same machine with the same tech person to give you the most accurate info on how Evenity has effected you.

BTW, I'm one of those lucky folks who had terrific gains and no side effects worth even mentioning on Evenity. I think most people have few or no bad side effects but if you do then you have to do something. It does not guarantee that you will have bad luck with the next med. I've been extremely food and chemically sensitive for 40 plus years with reactions to everything from spaghetti to green beans. At my worst I once spent 8 months on one food and distilled water. I just couldn't stop reacting to anything and yet I surprised myself taking Evenity with no problem at all. Your luck could go that way next time.

I started Evenity in July. I had debilitating back pain for three months prior when I started. I was hoping that my back pain lessens overtime. It has been 6 months and my back pain is worse than ever been. I barely could do my exercises. Walking was only joy I had. Beginning of October pain doctor did diagnostic shots to my back to see if I would be a candidate for nerve ablation. It was extremely painful and didn’t work. After that my knees started hurting and legs became very weak. I am not sure how much longer I can walk. The pain is so bad that my hands are shaking at the end of the day. Never noticed this before.I had a few already healed fractures . I am trying to figure it out if Evenity contributes to all of this. Should I ask my doctor to switch me to another bone builder. But maybe something else is causing all of this . Tramadol not helping any more. Pain doctor suggested Norco and still not helping. Anybody having similar experience? I am so scared that instead of improving my condition getting worse. I am scheduled for my 5th shot on October 23.

@sunny65 maybe you can ask about stopping after 5 or 6. The question is what to do afterward. I am doing Reclast. So sorry about your pain!

Thank you so much @windyshores for always replying to me. The bad thing is that I just found out that my endocrinologist, who I loved, is leaving this week.I don’t know where she is going. She scheduled DEXA test for me at the end of this month. ( I suppose to have it just next year). I wanted to see if Evenity helping me to build bone at least a little bit. My last year’s DEXA spine -4.8, which is very severe. She thought to put me on Tymlos for another year or so. I am getting new endocrinologist but she is booking March(!). Not sure how I can switch my meds. Will try tomorrow call them and explain situation. Bedsides I am not completely sure if this is Evenity or I afraid my discs are collapsing. The pain is behind control. I been taking pills that I never had before and they barely taking edge off the pain. Reclast is not a bone builder. I afraid to get even worse. You written me about Tymlos and I thought trying it. Not sure what I do. Please keep in touch.

@sunny65 I am so sorry about your pain. I also have fractures and long term pain so I get it, but yours is much worse!

Tymlos actually helped my pain. It is reputed to help with healing of fractures but if yours are not recent, they have probably already stabilized.

Have you had an MRI of your spine? Dr. McCormick told me that 40% of his patients have joint pain on Evenity. But your back pain sounds different and I do wonder if it is related to your fractures. In my case most of the pain is muscle spasms because my fractures have shortened my spine so much that I think my muscles are confused! (I have a soft brace with velcro that I wear if I have to lift anything but otherwise I don't wear one.)

But you could have something pressing on a nerve as a result of changes in your spinal structure, or a form of stenosis, or a slipped disc- all kinds of possibilities that seem more likely than an Evenity side effect in my view (but ask your doctor). I really hope you can have some imaging! And that you can get some relief!! Have you tried a muscle relaxant like Flexeril or Klonopin?

@windyshores , thank you so much for your answers. They somehow comforting.
I been using Clonazepam for over year now. It helps me sleep through the pain. I never tried Flexeril. The biggest problem I have that every doctor gives me a different answer. Very first diagnosis was - pain from annular tears. After that I seen neurosurgeon he said probably something pressing on nerve. I feel that my knees becoming very numb and my legs are so heavy. Never experienced this before. It is very confusing because we are going to doctors believing that they know something more and they can help. It is very hard with osteoporosis because not a lot of doctors can give you a treatment plan. I am going to the same pain clinic doctor for number of years. He is a good doctor but I had a couple of different injections without any improvement and now he is just prescribing more pain killers. I been taking smallest amounts possible and most of the days just suffering from pain I never imagined. I didn’t loose so much height.At least not yet. I been always pretty active and fit. Even I fractured my vertebrae I recovered very fast. No doctor told me to be careful after this. Until this March. It is scary to spent almost all day in bed. I feel like no way out. I agree that Evenity is not the main source of the pain but probably contributes to it. Do you think that would be wise for me to switch to Tymlos after a couple of months? I’ve read on this site that some ladies have back pain while on Tymlos. I know that you have different experiences. I am dedicated this week to find a new doctor and somehow get in touch to my new endocrinologist. I am seeing my doctor next week and ask to have a new MRI just to see if there any changes in my spine.DEXA test is already set.

@sunny65 I read an article about young people "bedrotting"_ meaning staying in bed. I also spend time in bed and joke that I am young again! I read, watch Netflix, and think of it as a refuge. But if severe pain keeps you in bed, it might feel more like a prison!

I am really glad you are getting an MRI. One healed fracture should not explain your pain. As for Evenity, I guess you can only tell when you stop. My doctors had "no data" on Evenity after Tymlos and even less about Tymlos after Evenity but maybe your doctor will agree.

I hope and even expect the MRI will be very helpful. Keep us posted. So sorry for your pain!

I would be suspicious of the Evenity. You had pain before but it is much worse since you started on the drug. Personally I would not take any more of that drug and ask what else might work for you. It sounds like a path you need to get off of right away!

Thank you so much for your reply and advice. My problem is that I just found out that my doctor ( she was PA) left the hospital and they giving me a new doctor. However, she is not able to give me an appointment till March. I am not a new patient. I was working with her’s PA. I was very happy with her work and I would follow her if I knew where she is going.
I am in a lot of pain every day and now this. I think I have to get a doctor before quitting Evenity. I have to go for one more injection next week and after maybe I can make a decision.