Anyone taken Evenity (romosozumab) for Osteoporosis?
Has anyone taken Evenity? I understand it’s only been on the market for a little over a year. I’m hoping it will help with my severe osteoporosis. Any information is helpful.
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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
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.
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.
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.
That’s me… Tall and super skinny. No broken bones. I hope I handle the tymlos like you with no side effects. I live alone as my husband is in another city for work and it’s been that was for three years. So I have too much time to research and worry. So my goal right now is to support others on this site and to stop worrying. I am thinking positive that all will be well and my bones will improve with the tymlos. The docs at Stanford say I will get strong again.
Stay in touch and let me know how it goes with evenity and future dexa scans. I am reading about the Berkeley doc tonight.
Have a nice evening
Candy
I was told by a board certified functional doc that my hormone levels are so bad that I will be continuing to break down my bones and should consider hormones along with the tymlos.
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.
Yes I have. They thought Crohn's, Celiac. The doctors are thinking I never reached my full bone growth as a child?
I was told the same thing. I most likely never reached full bone growth as a child.
Thank you. I will do more research.
I appreciate your message.
Hope you are doing well.