Positive Evenity results

Sorry about your fracture. Hope your recovery goes well. I was sick all last week w sore throat/sinus, so I actually go this Thursday for 1st does. Do you know if anyone has had hair loss on Evenity? Crazy thing to worry about but I have very thin hair to start with. Thank you for your encouragement.

I've read reports of hair loss from people on Evenity, even though it' not listed as a side effect found during trials. Facebook has a very good support group called "Evenity (Osteoporosis Treatment) Education & Support" and I've seen lots of comments there from women experiencing hair loss while on Evenity.

Yeah!! Congratulations!!!
This process of finding the right Osteo drug can be exhausting! I know!!
Sounds like Evenity is a blessing for you.
After Evenity do you have to go on any other drugs?
Were you on Evenity for 12 months?

I am at a crossroads of which way to go. My insurance does not cover Evenity, so I will need a letter of medical necessity. Oh Boy!
We are all so lucky to be able to connect on these health topics.
Thank you Mayo!

Thanks so much for information on the Facebook page (hair loss!!!) How strange; that doesn't sound great, to say the least, but there does seem to be a lot of bone "growth" with this medication.

Cheers! Alex Rose

There is always the option of paying for a DEXA. I've been told it is not super expensive. I just finished two years of Tymlos and will start Evenity soon and I plan to get a DEXA whether insurance will pay or not.

Before I started Tymlos two years ago the baseline DEXA in Nov. 2022 showed total spine of -5.1. Yikes! After 18 months on Tymlos the same facility showed -3 something. I knew it could not be right, so I had another DEXA by a facility (Solis) I went to in June 2022 and it showed -4.1. That sounded more believable. So, I have learned to be somewhat skeptical about DEXA scans. The literature says to have them at the same facility and using the same machine. There is also the variation in who reads the scan. Ideally the same person would read the next scan, but that is not feasible. I plan to get another DEXA from Solis before I start Evenity, even if insurance will not pay for it and I have to. It is certainly a complicated process, trying to increase the bone density we have and/or preserve it. I am 74 and able to continue to garden/landscape my property, so I am still active. I am careful not to BLT--bend, lift or twist. Rather than bend over, I get on my knees to load the washer/dryer, etc. I'm also careful getting into and out of bed by lowering myself on my side to my elbows and slowly down. To change position I roll, not lifting myself. There are many ways I have changed how I do things, to spare my spine. I have had several vertebral fractures that I was not aware of until I slipped on the ice in 2021 and had an x-ray which showed the prior fractures. They can be silent and painless. When I heard the word fracture, I pictured a break, like breaking your arm, but I learned that vertebral fractures are actually when the vertebra collapses. On X-ray you can see this because the ones that are fractured are narrower than the others.

Actually, Prolia is not an unknown and has been around for many years, more than 15 for sure. It works well for some people with few side effects and is one of the solutions to lock in gains after Evenity. But different things work for different people. However, it is importantly once you go off Prolia that something such as Reclast should follow it it fortify the gains from that.

It is not a crazy thing to worry about. Don't ever let anyone tell you it is. I had significant hair loss on Tymlos, and it's not listed as an official side effect. (I also have very thin hair.) My hair has not grown back, and it's been about a year and a half since I stopped taking it. I only lasted 6 months. The Tymlos nurse admitted to me that she had seen it in many other patients. I am supposed to go on Evenity, but am dragging my feet about it.

Thank you for your response. I lost.
A lot of hair when I got Lyme disease back in 2017. I quit coloring it then so as not to add chemicals, but it is not helped. My hair continues to fall out. Could be because of my diabetes medicine too. But to add infinity loss to it on top of it has me very worried. I dread the thought of wearing a wig.
Shampoos and gimmicks are just that!

Sorry, meant to say Evinity not infinity although the loss will probably be indefinite!