Tymlos for life? My endo is telling me this

Blezekian did say exactly what you quoted.
I'm pleased that they record the session and make them available online. They are really talking to each other and their differences of opinion are already known within the group.
They are also, as you may note, very polite to each other.
I have to look up every word, too--makes for slow listening.
There is an easy video that I like. In case you haven't seen it https://www.youtube.com/watch?v=Cd0YT-OV97c

Getting back to the original topic, @zygote, I seriously doubt a knowledgeable doctor would say they were going to prescribe Tymlos for life. Maybe the doctor misspoke, was unclear, or maybe you misheard. Do you have access to notes on the portal?

Some doctors (I have gone to a 4 over the years) will say we need to be on meds for life. A few will say we need to be on Prolia for life (if we are older). My doctor has mentioned drug holidays but the assumption is I will be on meds for a long time.

I honestly sometimes get concerned for a newbie reading this forum. There are many controversies, uncertainties and inadequacies in this field which is, hopefully, evolving. This forum is for sharing personal experience. The key is to have a good doctor to guide you.

I can sympathize. My decision to go with Tymlos was made easier by the fact I had a broken hip.

I kind of wonder about your dr. If they wanted ongoing maintenance why not go with Forteo, which is sanctioned for longer term use under certain circumstances?

When I started Tymlos in 2022 people expected Tymlos to get a similar extension of the 2 years, but to my knowledge that hasn't happened yet.

windyshores, I agree with everything you wrote in the post, especially about the need for good doctors.
Even though the good doctors disagree.
It's important for people who are newly diagnosed to see the varience, the controversies, the uncertainties and inadequacies. And to not simply accept a sinc erely good doctor's advice.
The very best of this forum is personal experiences. Your experiences are the most varied and the most helpful . Anectodal experiences are not so valued in many other (especially scientific) venues.
But personal experience is not the only value here. Sometimes a gem in a question is wildly expansive. Sometimes a speculation helps someone else question their physician in a more effective manner.
Trust in the intelligence of connect members is operative here.
I greatly appreciate and am deeply moved by your protectiveness of all of us. And I know that there are personal experiences that you would never tell, except for that it would ( and does) help others.
I needed that shred of information from @zygote to find her doctor, who luckily for me is only a few hundred miles away.
I fear more for the many who are on newer more hazardous medications with cliffs to fall off unknown even by the best of our good doctors.
Many, though, don't have the good ones. I have several, but would travel far to see yours.
How can reader even know if their doctors are good.

ahh. I see. I had my parathyroid snagged when I had my thryoidectomy and consequently became hypocalcemic, so I had to stay on calcitriol (VitD) and continue trying to get enough calcium in my food. (initially I was on 6 calcium a day, but over the years, food became my calcium source) Now that I'm on Tymlos I stopped calcitriol and don't have to worry about getting so much calcium in my food .

@gently, that simple video you posted above was super helpful!
I'm so grateful for this resource - you and Windyshores and others here are my lifeline through this. journey. As I posted recently, my 7/16 REMS showed the 100% fracture risk within 5 years. I had not thought about my bones prior to those results, I've been focused on my husband's cancer.
As you suggested (thank you), I was able to get a one month starter pack of Tymlos from my doctor's office and I'm still waiting for my expedited drug approvals. However I'm grateful for the 2025 drug cap of $2000, which at worse case, I can absorb. And as Windyshores suggested, I'm easing into Tymlos, I started 2 days ago and will remain at 2 clicks awhile - being the caregiver, I can't risk being seriously out of commission.
I don't really have a doctor's support yet and am relying on you all until I find someone. I learned about REMS, "Great Bones" , Tymlos, etc. from you all! I've been seen once by a local endocrinologist's PA and she's ordering the Tymlos and bone marker tests (but at baseline only. ) But I only knew what to request from your information.
At least this buys me some breathing space while I look for long term bone support. I can no longer travel for consultations and will need someone in Florida who can do the prescriptions and lab orders.
Thank you all for your support and for sharing your wonderful knowledge! Hoping that I can give back to this community in the future!

May I ask what prescription drug coverage u have as my coverage will cost me $900 per month and I do not qualify for help.

@fili123

I have commercial insurance. My copay is suppose to quite large as well, even though I went through my insurance company’s preferred pharmacy. I have yet to be billed, so not sure what it is going to be for sure. BUT, if you go to the manufacturers site (Radius I think, but google to make sure), if you have commercial insurance you can get a free copay savings card from them (no qualifying). I gave that to the pharmacy as well and they say they are processing it.

Since this discussion is primarily aimed at Tymlos I’d like to ask a question. I finished my 2-year protocol of Tymlos in a June of this year. I had another Dexa scan in July and the gains were not as significant as the first 18 months. My rheumatologist wanted me on Evenity but because we are traveling until October and cannot get in for the injections, I’ve taken a drug holiday while still taking all my osteo supplements and continuing with my bone loading exercises 6-days a week. Can anyone tell me how fast my gains will decrease by not being on a med? If I could stay on Tymlos longer, I would. I had a total of 14% increase in my spine and no side effects that were daunting. Thanks for any information you can offer.

@dooshie what does your endocrinologist say about this? Was your last Tymlos in July?

I was off Tymlos for a month last fall, due to being really sick with COVID with increased heart rhythm issues, then did it for 10 days, then did Evenity. I wondered the same thing.