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.

@psmnonna

@ykr I started Tymlos in January and took 22 doses. I had several side effects that I consulted with my Dr about. I took a month break from Tymlos, then on March 1 started again. One of the side effects was bloating that I attributed to the daily "gut" injections. I asked if the thigh was ok to inject and the doc said yes. I could not find any info online or from Radius health as to whether the thigh was acceptable for injection using Tymlos, so I called them just yesterday. They said that they had not performed any clinical trials using the thigh as an injection site, therefore could not say the thigh was an option for injection. But, they did say to follow Dr recommendation, so since my doc said the thigh is ok, I am using my thighs on a rotation basis. Thigh, abdomen, thigh abdomen kind of thing, so each leg and side of the my gut gets a break from daily impaling. Good luck on your journey!

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Did the bloating subside when you took the month long break from the Tymlos? Did you have any issues with the subcutaneous thigh injections?
Thanks, YKR

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@ykr

Did the bloating subside when you took the month long break from the Tymlos? Did you have any issues with the subcutaneous thigh injections?
Thanks, YKR

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@ykr Yes, the bloating did subside. No issues with using my thigh so far. Only taken 3 shots over the last 3 days (one in each thigh and one abdomen) and no bloating...yet. Hopefully with using my abdomen every other day it won't be bad. Whatever side effects you may have, and hopefully you have none or very few, make sure to let you Dr know. Good luck!!

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My kid has type 1 diabetes and I know that insulin is absorbed more quickly in the abdomen. I wonder if the "bolus" of Tymlos is therefore delivered more effectively in the abdomen. I have seen a chart for Tymlos shots in the thigh but I did all of mine in the tummy because of my experience with insulin.

Evenity in the abdomen hit me hard the first time. Second time in the thigh was gentler, for better or worse. My allergist suggested it.

The bloating goes down when you finish 🙂 I have so many fractures that my tummy sticks out anyway!

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@artscaping

@curlylocks and @cireland Good afternoon, wow, I haven’t found anyone on Tymlos. Even my pharmacist said I was the first in this area. Would you be comfortable sharing the reason for choosing this osteoporosis medication. Mine reason is. that I had a severe reaction to boniva and could not use anything with similar ingredients. I am finishing week four and still have just a teeny weeny bit of nausea. I take mine in the a.m. because I am worried that I will fall asleep and not remember. I have been known to do that. And another question....did you get this through your regular RX insurance? Did you explore Canada? Hope you both are having a lovely day.

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I could not find it available in Canada for USA patients

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I am a 71 year old woman, 13 year cancer survivor. Found out I need a L5S1 spinal fusion but with a T score of -2.9 my surgeon say he cannot perform until we get my numbers up. I have been getting infusions of Reclast for years and each year my scores fall a bit more. My surgeon suggested Tymlos as first choice or Forteo to build up my scores so that surgery would be possible. I’ve been reading as much as I can and the side effects seem daunting. And the out of pocket costs. Would appreciate hearing from someone who has had both drugs and their experiences. Thanks

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Tymlos is slightly better for spine than Forteo, I have been told. The dose is adjustable so you can try full dose, but back it down and slowly go up, to help your body get used to it. But most people do fine with these meds.

Was Evenity discussed? Some docs seem to be prescribing that as a priority drug. (I liked Tymlos!)

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I have a similar # from my dexa scan. I will start tymlos next week.

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@ykr

Did the bloating subside when you took the month long break from the Tymlos? Did you have any issues with the subcutaneous thigh injections?
Thanks, YKR

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I stopped injecting in my tummy and I might have an LCarnitine deficiency (which I had stopped due to having IC) but I went back on the LCarnitine, inject in the thighs only, and my belly is back to normal after the month. It was pretty bad. I see it's documented for men as a side effect, but not for women. However, all the women seem to notice! I'm small framed so the huge abdominal distension was super upsetting!!!

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@candy209

Hi Chris
I would like to get in touch with your dentist regarding my dental concerns. I need to start tymlos and am having an issue with my jaw. I have some bone loss and it’s not healing following a root canal that lead to an extraction. I have been to several oral surgeons and can’t seem to get any answers.
Please message me.
Candy

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Hello, I would like to get a hold of your dentist too. I have many about my teeth and Tymlos also reckless does your dentist talk to people? I am willing to pay I’m in California so it would have to be a phone call thank you so much.

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@amillisp

Hello, I would like to get a hold of your dentist too. I have many about my teeth and Tymlos also reckless does your dentist talk to people? I am willing to pay I’m in California so it would have to be a phone call thank you so much.

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That’s recast not recless

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