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Tymlos for life? My endo is telling me this
Osteoporosis & Bone Health | Last Active: Sep 4 4:01pm | Replies (63)Comment receiving replies
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.
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@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!