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.

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elizabethaames | @elizabethaames | Apr 15, 2023
In reply to @lnl "Hi, Elizabeth-- The guidance I got from my Dr--and from everyone on this site-- was to..." + (show)
@lnl

Hi, Elizabeth-- The guidance I got from my Dr--and from everyone on this site-- was to ramp up slowly. It seems to lessen the side effects for many people by letting your body get used to the drug. Many people on this site have also reported that they can tolerate, for example, a 6 but not a 7. A lot of us have been instructed to play around with the dosage to see what you can take on the theory that something is better than nothing. Who knows what the Dexa will show after all the fiddling. I'm sorry insurance is dictating your care. That's terrible, but it is the reality we live in. I hope you find a solution to your neuropathy.

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gosh, thanks...I wish I would've known that it was adjustable going in as it WAS a big shock to the system...Definitely going to bring this up when I report the neuropathy...but most of all, hope all this is 'worth it' w/a Dexa at the end of all this off...Only other inquiry is I see people mentioning thigh vs abdomen alternatives and I was told that's only for Forteo not Tymlos...which needs to remain in the abdomen?

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2 replies
sarahstuart Sarah Stuart McIlvain | @sarahstuart | Apr 15, 2023
In reply to @lnl "Thank you for sharing this, and I'm so sorry you experienced it-- but good job on..." + (show)
@lnl

Thank you for sharing this, and I'm so sorry you experienced it-- but good job on the water aerobics! Even though your doctors found no correlation with Tymlos, it's hard to think (even wrongly) that it isn't involved. I think that's only human: you think-- I've lived 80 years without this happening, and now, two weeks into a new drug, I get this. Good luck with PT. I hope you find a solution to your vertigo and that you can continue Tymlos if that is the plan.

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Thank you for your good cheer! As a long retired competitive swimmer, I
still have the ability to clear my brain and focus on the immediate short
goal. i.e. descend the stairs safely. // I'm still onTymlos.

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lnl | @lnl | Apr 15, 2023
In reply to @elizabethaames "gosh, thanks...I wish I would've known that it was adjustable going in as it WAS a..." + (show)
@elizabethaames

gosh, thanks...I wish I would've known that it was adjustable going in as it WAS a big shock to the system...Definitely going to bring this up when I report the neuropathy...but most of all, hope all this is 'worth it' w/a Dexa at the end of all this off...Only other inquiry is I see people mentioning thigh vs abdomen alternatives and I was told that's only for Forteo not Tymlos...which needs to remain in the abdomen?

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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.

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2 replies
susanfalcon52 | @susanfalcon52 | Apr 16, 2023

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.

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1 reply
candy209 | @candy209 | Apr 16, 2023
In reply to @lnl "Hi, Elizabeth-- The guidance I got from my Dr--and from everyone on this site-- was to..." + (show)
@lnl

Hi, Elizabeth-- The guidance I got from my Dr--and from everyone on this site-- was to ramp up slowly. It seems to lessen the side effects for many people by letting your body get used to the drug. Many people on this site have also reported that they can tolerate, for example, a 6 but not a 7. A lot of us have been instructed to play around with the dosage to see what you can take on the theory that something is better than nothing. Who knows what the Dexa will show after all the fiddling. I'm sorry insurance is dictating your care. That's terrible, but it is the reality we live in. I hope you find a solution to your neuropathy.

Jump to this post

Good morning.
I am about to start tymlos. I have so many gut issues and pain in my stomach I worry about injecting there.
How long have you been on tymlos. Hope your dexa shows wonderful improvements. Can’t wait to hear.
Best wishes,
Candy

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1 reply
sarahstuart Sarah Stuart McIlvain | @sarahstuart | Apr 16, 2023
In reply to @elizabethaames "gosh, thanks...I wish I would've known that it was adjustable going in as it WAS a..." + (show)
@elizabethaames

gosh, thanks...I wish I would've known that it was adjustable going in as it WAS a big shock to the system...Definitely going to bring this up when I report the neuropathy...but most of all, hope all this is 'worth it' w/a Dexa at the end of all this off...Only other inquiry is I see people mentioning thigh vs abdomen alternatives and I was told that's only for Forteo not Tymlos...which needs to remain in the abdomen?

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I asked the nurse educator about thigh vs stomach and was kindly told that I didn't have enough fat on my thighs, but plenty of fat around my belly button.

Sarah Stuart

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lnl | @lnl | Apr 16, 2023
In reply to @candy209 "Good morning. I am about to start tymlos. I have so many gut issues and pain..." + (show)
@candy209

Good morning.
I am about to start tymlos. I have so many gut issues and pain in my stomach I worry about injecting there.
How long have you been on tymlos. Hope your dexa shows wonderful improvements. Can’t wait to hear.
Best wishes,
Candy

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Hi, Candy--Here's my level of expertise: I finished day 2 yesterday. My injection sites stay mildly sore for a few hours, but it does go away. Have a look at the whole thread if you haven't already. There's a lot of information that may help you. I will be reporting back tomorrow after my meeting with the Tymlos nurse educator.

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marciagb | @marciagb | Apr 16, 2023
In reply to @skanter2 "Finishing up first week on Tymlos. First day experienced a terrible headache. All good days 2-5...." + (show)
@skanter2

Finishing up first week on Tymlos. First day experienced a terrible headache. All good days 2-5. Day 6 the morning after shot, I had an episode lasted about 20 minutes- severe jaw pain. Anyone experiencing this?

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I started in November 2022. I also experienced severe jaw pain for about 20 minutes with my first 2 doses. After that I no longer had jaw pain but I continued to get severe headaches. I also developed tinnitus. After a month I was ready to stop the treatment but I found this group and learned that the dosage could be lowered. My doctor was fine with that so I tried stepping it down. I was still having side effects so I decided to take a week off (lots of family visiting over Christmas). I then started back at only .3. I’ve tried upping it several times but just dont feel well. My specialist is fine with this. My body seems to have adjusted now and I’m not having much side effects any more at .3 so tomorrow I was going to up it to .4.

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Apr 16, 2023
In reply to @elizabethaames "I'm confused on all the references to 'one click, two click' stuff as I was put..." + (show)
@elizabethaames

I'm confused on all the references to 'one click, two click' stuff as I was put on Tymlos back in Oct. and told 'dial it to 80' period. I've also had some red spot pin prick soreness and def feel the needle going in too...as I think I do it too slow.
Also have had vertigo sporadically and initially had hair loss (about a brush a week) but that's tapered off...

Biggest prob right now is I've ended up w/some neuropathy as in 'tingling toes' and numbness which to me seems like a 'fall risk' as I'm an athlete, 63 as well and don't want to make my circumstances worse! I asked to be switched to Forteo right away as it was a 'gold standard' etc. but insurance wouldn't let me due to 'expense' so I'm stuck on Tymlos...and have adapted. It's a shame when insurance companies control healthcare...doc said I'd have to prove worse 'adverse reactions' for them to switch me over as they need 'substantiation'

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Good morning @elizabethaames and @lnl,
Thank you @ini for expressing your willingness to share your new medication journey with Connect members. That will be so very helpful to many.....some who read it today and others who read and benefit from your experiences much later. Have you ever realized that hundreds of folks may read your post and benefit......while only a handful write a response?

The member who knows the most about "clicks" as well as apparent side effects and even fractures is @windyshores. You may want to find her by using the search bar at the top of your screen. Pretty informative and giving lady.

By the way....I was also "stuck" on Tymlos at first because of insurance and costs. It ended up being a good decision. And as I recall, I already had SFN, small fiber neuropathy with lots of tingling toes and numbness in both my feet and my hands. So....I don't know if Tymlos was the culprit or SFN. I am off Tymlos now and, unfortunately, the neuropathy symptoms are still there.

May you have happiness and the causes of happiness.
Chris

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lnl | @lnl | Apr 17, 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.

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I met on zoom with the Tymlos nurse and she explained that because all the studies were done based on abdomen injection sites, she cannot legally discuss any other injection sites with people. She recommended talking to your doctor about that.

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