Post Evenity DEXA numbers

Posted by susanfalcon52 @susanfalcon52, Jun 7 5:48am

So, I have my results after 12 months on Evenity.
Lumbar spine went from-2.5 to -1.8.
Left hip went from-2.0 to -1.8.
For the right hip and right femoral neck,
there are no scores, presumably because they are now titanium.

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@sunny65

I just wanted to ask opinion about physical therapy for bulging disc. Since I have a severe osteoporosis and a few fractures already. I been trying to walk and sit as straight as I can. So, my neurologist recommended physical therapist who supposed to be great and knowledgeable. I went to therapy a couple times. Seems like he does a lot and means well. But one exercise is very bothering me- he is telling me to walk leaning forward and only exercise for home is given to me is sitting in the chair and keeping bending forward. I am very confused because I have fractured back and I been told to walk straight and tall. Should I start questioning all his approach ? Or I have just trust him since he is professional.

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I just watched a video by Margaret Martin @melioguide.com, an expert on exercise and PT for osteoporosis including fractures. @sunny 65

You should walk and sit as straight as you can and not do any exercises that involve bending. You should avoid bending in general, and twisting.

I have run into several PT's who are supposedly good with osteoporosis and gotten away from them as fast as I can.

I often wonder if they have been trained to prevent osteoporosis. Not treat it, and not with fractures. Those of us with fractures need really expert help or we will get hurt.

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@windyshores

I just watched a video by Margaret Martin @melioguide.com, an expert on exercise and PT for osteoporosis including fractures. @sunny 65

You should walk and sit as straight as you can and not do any exercises that involve bending. You should avoid bending in general, and twisting.

I have run into several PT's who are supposedly good with osteoporosis and gotten away from them as fast as I can.

I often wonder if they have been trained to prevent osteoporosis. Not treat it, and not with fractures. Those of us with fractures need really expert help or we will get hurt.

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Thank you so much @windyshores . That’s what I am also finding out by reading various articles. I asked him this question on the second time. He said that only thing can fix me is this exercise and walking bending forward. I am seeing neurosurgeon tomorrow morning . I am sure that I am not the candidate for any back surgery. But I want to listen his opinion on the therapy and overall maybe he has advice how to deal with this awful pain. I’ve been prescribed pregabalin and been taking for over 2 weeks without any pain relief. It’s just makes me dizzy and forgetful.Thinking of quitting it shortly. I am so lost that no doctor can help me with the pain. My first Evenity shot is scheduled. I am nervous but I can’t imagine that it could be worse than what I am experiencing right now. I am so grateful to you for responding to my message. God bless you.

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@sunny65

Thank you so much @windyshores . That’s what I am also finding out by reading various articles. I asked him this question on the second time. He said that only thing can fix me is this exercise and walking bending forward. I am seeing neurosurgeon tomorrow morning . I am sure that I am not the candidate for any back surgery. But I want to listen his opinion on the therapy and overall maybe he has advice how to deal with this awful pain. I’ve been prescribed pregabalin and been taking for over 2 weeks without any pain relief. It’s just makes me dizzy and forgetful.Thinking of quitting it shortly. I am so lost that no doctor can help me with the pain. My first Evenity shot is scheduled. I am nervous but I can’t imagine that it could be worse than what I am experiencing right now. I am so grateful to you for responding to my message. God bless you.

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It is very hard to find a PT who knows how to help us. I am trying a well-regarded pain management program soon, but even that I will approach with distrust! My previous PT was at least safe and only did massage!

People do well with Evenity and many have virtually no side effects.

Margaret Martin at melioguide.com is the best...she also has a book available online. She has a video class for those of us with fractures but it costs money and I haven't done it yet.

So sorry you are in pain!

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@hopefullibrarian

I hope the new pain therapy for your back works. Fingers crossed.
I've had back problems for over 25 years, so I'm very happy that Evenity hasn't aggravated that. I had one injection of Prolia 8 months prior to starting Evenity, and that did caused some back pain.
As far as side-effects I've experienced on Evenity--
There's been injection site swelling and sensitivity following each one. After the 4th set, there was some burning too. In each case, it went away withing 24 hours.
Right after the first treatment, I got a cold sore (someone else on here had that too), and I was ravenously hungry. I attribute the hunger to my body needing more material and nutrition to grow bone.
Following the 3rd treatment, I felt extremely tired for several days.
Just after the 5th set (two weeks ago), I got arthralgia in my ankles and in one wrist. It's a tingling feeling--not painful--but it caused one day of sharp pain in one ankle. I couldn't walk on it, but it just suddenly went away the next day. That's the worst thing that's happened.
Over the last couple of days, I've been completely wiped out again. Part of that is down to my smoke detector going off twice in the middle of the night. Haha! Thankfully, it was just a fault in the system, and not an actual fire. I felt like crap the next day, and I've been abnormally tired ever since then. I'm pretty sure Evenity is playing a role in that.
Overall, I'd say that my side effects have been minimal.
I was super anxious about starting the treatment too, but it proved to be no big deal (with the exception of the ankle pain). I'm thrilled with the results so far. My spine went form t-score -3.7 to -3.2 after only 3 sets of injections. I also got my BTMs tested around that time, and they were great. P1NP = 102. CTx = 355.
It's more likely than not that you'll be fine on Evenity. Most people, if they have side-effects at all, have mild ones.
Even if Evenity doesn't work for you, it's easy to stop the treatment and go another route.

I look forward to hearing about how it goes.

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Did you have other osteoporosis drugs, besides the one shot of Prolia, prior to starting Evenity?

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@birdie78

Post Evenity results:
L1-L4: -4.0 improved to -3.1 (17% improvement)
Left femoral neck: -2.7 to -2.5 (4.3% improvement)
Right femoral neck -3.2 to -3.0 3.9% improvement)
My insurance covered my course of Evenity. I woudl say overall it was worth it to get the improvement. I will insist on annual bone scans rather than wait the 2 years -even if I have to pay out of pocket. I turn 80 in a few months. Hope this is helpful.

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Were you ever on other osteoporosis medications before you started Evenity?

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@sunny65

I am not sure who has to order additional tests. I don’t have endocrinologist. Right now I just working with NP and she specializes in osteoporosis. I had endocrinologist but he was terrible. NP is great communicator. I like her a lot. Should I still find endocrinologist? It’s so nice of you to respond. I really like to be part of this group. I don’t feel so alone. I definitely let you know how my first interaction go. It’s set for July 2. I might have to change that date to sooner. Not sure yet.

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Hi sunny65, I'm so glad to be a part of this group too. I was flying blind, and depressed about my health before I joined. The support of the members here has been a total game-changer for me.
To answer your questions...I think any doctor or NP can order the tests. If your NP specializes in osteoporosis she may be familiar with them. You don't necessarily need an edocrinologist, or a specialist for that matter. There are providers at all levels and in several fields who can treat osteoporosis. It's more important that you arm yourself with knowledge, advocate for your care, and have a provider who is willing to listen and work "with" you to find the right path forward. Having said that, I have an endocrinologist, an orthopedic surgeon, and a gynocologist. All three are supportive, and I like to get their different perspectives. Plus, if I can't get what I think I need (ie tests) from one, I go to another. Kind of like a child of divorced parents. LOL!
If you have to start your treatment sooner, that might be a good thing. A couple of days after the first injections, I felt fine, and my worried mind was able to rest. It was such a relief.

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@sunny65

I just wanted to ask opinion about physical therapy for bulging disc. Since I have a severe osteoporosis and a few fractures already. I been trying to walk and sit as straight as I can. So, my neurologist recommended physical therapist who supposed to be great and knowledgeable. I went to therapy a couple times. Seems like he does a lot and means well. But one exercise is very bothering me- he is telling me to walk leaning forward and only exercise for home is given to me is sitting in the chair and keeping bending forward. I am very confused because I have fractured back and I been told to walk straight and tall. Should I start questioning all his approach ? Or I have just trust him since he is professional.

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I don't claim to know what's right for treating a bulging disc. I've never had one, though I have had a pinched nerve, and more recently a compression fracture, so I've been through my fair share of physio.

My physio who treated me shortly after my compression fracture, seems to have been a lot like yours. The exercises he gave me included bending forward. It actually made the pain worse. The next physio focused mostly on massage. When the pain and inflammation went down, she got me exercising, and none of it included bending forward.

I'm curious to know if your PT doing anything to relax your back--massage, cupping, etc? What about things like taping it to help restrict movement?

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@pami

Did you have other osteoporosis drugs, besides the one shot of Prolia, prior to starting Evenity?

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Hi pami,
Before starting Evenity, I'd only had the one Prolia shot, and no other OP treatment.

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@hopefullibrarian

I don't claim to know what's right for treating a bulging disc. I've never had one, though I have had a pinched nerve, and more recently a compression fracture, so I've been through my fair share of physio.

My physio who treated me shortly after my compression fracture, seems to have been a lot like yours. The exercises he gave me included bending forward. It actually made the pain worse. The next physio focused mostly on massage. When the pain and inflammation went down, she got me exercising, and none of it included bending forward.

I'm curious to know if your PT doing anything to relax your back--massage, cupping, etc? What about things like taping it to help restrict movement?

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Thank you for your response. My PT doesn’t do massage. He makes me bent different ways and presses hard on my hips. He wants me to constantly walk bent forward. Only he does is ultrasound and electric stimulation. Not sure if this helping or hurting. I went to see neurosurgeon today morning and he told me that the pain is manly from osteoporosis and I have to have a different therapist. He gave me name. I will try. My pain is so unbearable and I am not sure anymore where is coming from. It’s so frustrating.

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@hopefullibrarian love this:
"Plus, if I can't get what I think I need (ie tests) from one, I go to another. Kind of like a child of divorced parents. LOL!"

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