No response to 12 months of Evenity?

@evelyngrace
I understand your searching for why Evenity did not work. The questions others have brought up on Bone turnover markers is very valid. If P1NP is not at least 50 within one month, that is cause for concern; not necessarily to stop the drug, just that its effectiveness may not be working well. There is good research on this point. But at this time, it is in the past. You want to know why it didn't work. ( but believe me - don't neglect BTM in the future... ever)

I too had no change on Evenity - highly unusual. I have had extensive testing for all core labs , genetics invitae skeletal dysplasias ( normal excpet for Sticklers) ) as well as BTM, so we knew I wasn't responding as hoped. But Not only that, I fractured in my 10 month along with tendon issues in ankles and wrists.

Astonished,,,, and perplexed, To distinguish between severe refractory OP and some other condition, doctors finally decided to look at the cells ( rather than depend on labs tests) and do a dual labeling tetracycline bone biopsy. Well unfortunately, biopsy results show a mineralization defect/osteomalacia ( OM soft bone disease) as well as OP. All common cause of OM have been eliminated and now we hope to find the cause that can be treated. It may require a deeper look at genetics.
To your point, Evenity is contradicted in OM - so evenity could not help me - but we did not know that I had OM as nothing indicated the problem except my repeated unusual fractures and weight bearing weakness.

MEtabolic bone disease is a complex problem and gettng the right therapy is different for everyone. Please keep hope - believe you can be healed and then do the work to get the right team to help you. Sending positive energy for your full recovery. Blessings of healing light

Evelyn, I'm on my 9th month of Evenity. Your post is very interesting. I'm not a doctor (I'm a nurse) but maybe Evenity has improved your fracture risk by building new bone of better quality even if the overall density hasn't increased on the Dexa scan. As I understand it, Dexa scans aren't the only or best test for measuring bone density. Also I read, "Romosozumab increases the formation of new bone tissue, and reduces the breakdown of existing bone. This helps strengthen bones and reduce the risk of fractures." It seems to suggest to me that the importance of the drug is in building new, better quality bone. Just my idle thinking here, it will be interesting what you find out.

I see a rheumatologist rather than an endocrinologist. My rheumatologist did order bone markers. One of the numbers was supposed to go down and it went up and she told me it's due to bone remodeling activity. Not only does new bone grow but old bone has to be broken down too. It's so complex. Many people on this site see endocrinologists but I see a rheumatologist.

@followheart87 I see an endocrinologist as I am followed for thyroid issues as well. You're making a very interesting point. Taking another look at my DXA scan it does show that my fracture risk has improved to 21% vs 24% pre-Evenity and risk for hip fracture is now 5.6% instead of 7%. Also my TBS, trabecular bone score shows 5.9% improvement. This isn't close to what you'd expect with Evenity but it does show a positive impact. And, most importantly, I have not had another fracture. Degenerative changes in the spine can impact the accuracy of the DXA scan and being in my early seventies this is a factor. Bone biology is very complex as you've said and it's quite challenging as a non medical person to comprehend and manage. I thank you for your insight on how this drug works and wish you the very best outcome with your course of Evenity.

@dmshope Thank you for sharing your story with me. So very sorry that you've had to go through so much to get some answers. It is a real gut punch to get to the end of 12 months of Evenity only to see a DXA scan saying no there's been no change in bone mineral density. The recommendation is to look for secondary causes of bone loss as this point so I don't think I'm going to have any answers for while. I appreciate your positive energy and encouragement that there is a path to healing in this complex world of metabolic bone disease. It's difficult enough for anyone with OP but then for some us it has to be that much more complicated. We have to stick together!! Wishing you well on your journey!

@evelyngrace I was curious about why the doctor went with Evenity as your first drug, that’s all. I am encouraged to hear of situations where the doctors are beginning to start with anabolics instead of the usual bisphosphonate.

Prior treatment with bisphosphonates doesn’t always blunt response to Evenity. I am proof of that. I took Fosamax (alendronate) for over five years before starting Evenity. I had a 30% improvement in bone density after 11 months of Evenity.

I also have hypercalciuria which wasn’t discovered until after starting on Evenity. I started taking a diuretic shortly after and perhaps this helped me achieve a good outcome from the medication.

Good luck, hope you can get to the bottom of this. Take care!

@oopsiedaisy That’s an awesome response to Evenity!! Never heard of a 30% increase. You’re an overachiever! Best wishes for continued success with your OP treatment.

Good luck, Evelyn! Keep us posted.

@evelyngrace Thank you for the best wishes. I've used a multi-faceted approach to improving my bone density since my fracture, which took me by complete surprise. I believe this helped Evenity work to improve my lumbar spine density. My hips have not changed in many years but at least they remain stable.

@evelyngrace supongo sin ser médica que si no cambió el valor indica que tampoco progresó, quizás sin Evenity hubiera aumentado el riesgo. Yo voy en la mitad del tratamiento.