Anyone taken Evenity (romosozumab) for Osteoporosis?

I’m currently on Tymlos - no problems with that. Was on Forteo a few years ago and that went well, too. The Forteo did improve my bone density.
When I finish the Tymlos next month, I’m going on Evenity.
I have been worrying about the side effects, but this site has made me feel better.
I will post again after my first injection. Wish me luck!

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I wish you all the best and I am looking forward to hearing how your dexa scores come out. What were your numbers when you started forteo? Are you working with a Mayo doctor?
All the best,
Candy

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Candy,
Thank you for your question. My T scores are:
Lumbar spine -2.5
Left hip -2.0
Left femoral neck -2.5
Right hip -2.2
Right femoral neck -3.2
I’m not working with a Mayo doctor. I have an endocrinologist and a rheumatologist both following me locally.
A few years ago, I read Dr Lani Simpson’s book - Bone Health. I highly recommend this book. She is in Berkeley, but I consult with her. I’ve sent her cds of Dexas and she has advised me. She has YouTube videos and a good website that you can check out. She is cautious about drugs, but not opposed to them.
I probably should have gone on another drug after the Forteo as it did help. I was only on it for four months, but there was improvement.

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Thank you for getting back to me. I am close to Berkeley.
It gives me hope that your numbers have improved. My endo said that I would most likely have to go on something besides evenity after my forteo because other drugs will help you maintain your bone that you built with forteo or tymlos. Not sure if that is totally correct though.
I’ll check out the Berkeley doctor as well and thank you for sending her information.
Have you had any fractures? I am 64 and very slight built but tall. I really am also tempted to also try a low dose hormone as well because my numbers are pretty high.

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Candy,
I have not had any fractures and have had falls. Not sure what that means.
I was originally on Forteo because my then doctor got it for me from a drug rep. After that, bones improved, but I didn’t follow right away with another drug.
This is my fault.
This is a very sad story- my bone doctor fell and broke several bones. The irony. She died several weeks later.
Her nurse called me and said that she had a good bit of Tymlos in the frig and that she would have wanted me to have it. I picked it up, but didn’t use it until it was in danger of expiring. I regret this.
I am 70. Tall, super skinny in youth, former smoker.

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Tammy, have the docs explored what are factors that brought about your OP and are interfering with your improvements? When there are secondary factors, it opens the door for intervening in those forces that are tearing down your bones. The primary cause of female OP is menopause--loss of estrogen. I am sorry you are beset by all these fractures. The down time from exercise sets up a cascade of weakening bones that would otherwise benefit from forces you exert upon them. The drugs can't do the work alone. I hope you can get the docs to explore what is causing this.

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Hi @momof3gmaof15, I moved your questions about Evenity to this existing discussion:
- Anyone taken Evenity (romosozumab) for Osteoporosis? https://connect.mayoclinic.org/discussion/evenity-osteoporosis/

I did this so you can easily connect with others talking about Evenity. There are many discussions about Evenity. If you type Evenity into the Search field at the top of the website, you'll find a wide variety of topics.

For example, this is the discussion that @pedsnurse61 recommended:
- My Experience on Evenity for Treating Osteoporosis https://connect.mayoclinic.org/discussion/evenity/

Like @dk68, I wonder if there are other underlying causes that are preventing you from having success with medications. You mention doctors - plural. Have you had a second opinion with an endocrinologist?

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Yes I have. They thought Crohn's, Celiac. The doctors are thinking I never reached my full bone growth as a child?

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Hormones strike me as a no-brainer. Hormones are the conductors of so many functions in the body. You don't say which hormones. Probably, the most optimism for women are the bHRTs. There are lots of other critical hormones that affect bone health. I don't know how they are modulated when they are out of whack, but many hormonal problems are well defined, diagnosed, and treated, and well-tolerated. Some hormone levels are markers for benign tumors (adrenal/parathyroid, etc.) that are known to cause bone problems. You have get all the knowledge you can regarding levels, correlations with the levels, possible treatments. Then you are in better position to ask questions working with your MD.

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