1. < Osteoporosis & Bone Health

Has anyone been using Tymlos?

Posted by curlylocks @curlylocks, Aug 1, 2019

Has anyone been using Tymlos? I received devastating news that my bone density score is 4.6, much worse than my age of 72. Recommendation is Tymlos.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

cloud60 | @cloud60 | Jun 29, 2023
In reply to @windyshores "@cloud60 bones are not more brittle from Tymlos. Bones become more brittle over time with anti-resorptives..." + (show)
@windyshores

@cloud60 bones are not more brittle from Tymlos. Bones become more brittle over time with anti-resorptives like bisphosphonates (Reclast, Fosamax etc.) and Prolia, and to a lesser extent Evenity (in the last months). Tymlos and Forteo build quality bone, my doc has said.

Jump to this post

My specialty pharmacy said Tymlos make bones more brittle. They had to by law read an explanation of the drug from the Tymlos company to me. I heard all anabolics and all bisphosphonates make the bones more brittle but less prone to fragility fractures. So if you have an accident and break a bone it can be harder to heal and some people say you may never heal.
Basically we can’t break a bone from an accident now.

REPLY
1 reply
cloud60 | @cloud60 | Jun 29, 2023
In reply to @adcummings "You can turn the dial one click at a time. My doctor told me to start..." + (show)
@adcummings

You can turn the dial one click at a time. My doctor told me to start with half dose, which is 4 clicks (the point between the two arrows). I started mine two days ago. I definitely feel the needle and do not like it. I’ll continue to do it because I have osteoporosis in my right hip and osteopenia in my left hip and spine. I avoided it for a few years, but I saw a classmate with severe osteoporosis a while back and decided it was time. Hope you are doing well with yours.

Jump to this post

I asked for the smallest needle size when ordering it and the pharmacy gave it to me.

REPLY
cloud60 | @cloud60 | Jun 29, 2023
In reply to @adcummings "You can turn the dial one click at a time. My doctor told me to start..." + (show)
@adcummings

You can turn the dial one click at a time. My doctor told me to start with half dose, which is 4 clicks (the point between the two arrows). I started mine two days ago. I definitely feel the needle and do not like it. I’ll continue to do it because I have osteoporosis in my right hip and osteopenia in my left hip and spine. I avoided it for a few years, but I saw a classmate with severe osteoporosis a while back and decided it was time. Hope you are doing well with yours.

Jump to this post

Do you just increase one click per day?

REPLY
cloud60 | @cloud60 | Jun 29, 2023
In reply to @lnl "I was told both injection sites are possible. I have a zoom meeting with a Tymlos..." + (show)
@lnl

I was told both injection sites are possible. I have a zoom meeting with a Tymlos nurse on Monday, and I will confirm with her and report back to this community. You can sign up to get assigned a remote nurse on the Tymlos website.

Jump to this post

Where is that on the website ?

REPLY
1 reply
cloud60 | @cloud60 | Jun 29, 2023
In reply to @susanfalcon52 "I’ve been on Tymlos for a month. I don’t seem to have any side effects. After..." + (show)
@susanfalcon52

I’ve been on Tymlos for a month. I don’t seem to have any side effects. After another month on Tymlos, I go on Evenity.

Jump to this post

You are doing two months of Tymlos and switching to evenity?

REPLY
2 replies
susanfalcon52 | @susanfalcon52 | Jun 29, 2023
In reply to @cloud60 "You are doing two months of Tymlos and switching to evenity?" + (show)
@cloud60

You are doing two months of Tymlos and switching to evenity?

Jump to this post

I did Tymlos for four months and switched to Evenity. With Tymlos, it was the cost factor.

REPLY
1 reply
lnl | @lnl | Jun 29, 2023
In reply to @cloud60 "Where is that on the website ?" + (show)
@cloud60

Where is that on the website ?

Jump to this post

I'm sure it's not. It was something the Tymlos nurse mentioned when I told her early on that I was hesitant about injecting into my stomach. FWIW-- I only tried my thigh twice. My stomach is easier, and I have (mostly) figured out how to make it not hurt.

REPLY
cloud60 | @cloud60 | Jun 29, 2023
In reply to @susanfalcon52 "I did Tymlos for four months and switched to Evenity. With Tymlos, it was the cost..." + (show)
@susanfalcon52

I did Tymlos for four months and switched to Evenity. With Tymlos, it was the cost factor.

Jump to this post

Tymlos is expensive / I am doing it through my insurance and the other part manufacture savings program. I took me weeks to learn the way through the maze.

REPLY
windyshores | @windyshores | Jun 29, 2023

@cloud60 everyone is different. You may do just fine with Tymlos and therefore could go up one click a day. Others may benefit from a slower ramp up. I never got to the full 8 clicks (except for a few days) but that should be the goal and most end up doing full dose.

I have also been told that thighs are okay but since studies were done with stomach, many docs, nurses and pharmacists will say tummy only. I stuck to tummy, at least 2" from the navel. I know from my kid's type 1 diabetes/insulin shots that absorption is best in the tummy.

@susanfalcon52 no sure this applied for you.....For those 65 and over, Radius Assist can provide free Tymlos if you meet income guidelines. They have changed how they provide this info. I had a personal rep at Together with Tymlos who guided me and now it seems you go on the Radius website to find the paperwork to apply for aid.

REPLY
1 reply
cloud60 | @cloud60 | Jun 29, 2023

I hear you I was devastated in February with -4.7 lumbar and I am 60. I have slowly come out of the shock and first started bisphosphonates that didn’t work bc they bothered my stomach and now on Tymlos. I hope it goes well for us all. One thing I am learning is the more agile things you do the better. You will find your path - we all are.

REPLY
View MoreView Less
Please sign in or register to post a reply.