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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mamaearl | @mamaearl | Sep 14, 2023

I do what my bone clinic tells me to but I don't know what to do. I didn't want Evenity because of all the side effects I read about. From what I am reading, I think there needs to be more research on these drugs for osteoporosis. I have been on osteoporosis for meds for YEARS.

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windyshores | @windyshores | Sep 14, 2023
In reply to @ymv "I’m reaching the end of 3 months on Tymlos and currently at 7 clicks. The side..." + (show)
@ymv

I’m reaching the end of 3 months on Tymlos and currently at 7 clicks. The side effects are dissipating a bit. Will increase to 8 clicks when I start my new pen next week. The most distressing side effect is weight gain mostly in belly fat. Several women on Forteo have posted about their weight gain. Since the 2 drugs are similar I’m considering it a side effect

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@ymv my belly bulge went away after a few months! I never actually gained weight. Not sure what the belly swelling is all about but I have seen several report it.

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1 reply
vickiemazzola | @vickiemazzola | Sep 15, 2023
In reply to @mamaearl "I was on Tymlos for over a year and I wanted to stay on it. I..." + (show)
@mamaearl

I was on Tymlos for over a year and I wanted to stay on it. I had no side effects and no change in my weight. Now I am on Evenity and the injections are painful when given to me. It's 2 injections on the same day once a month. Now I have more pain in my bones with Evenity.

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I am about to start that switched from Tymlos. I was having to many side effects with it. Dr. couldn't reduce my dosage of Tymlos because my levels are so low.

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1 reply
windyshores | @windyshores | Sep 15, 2023
In reply to @vickiemazzola "I am about to start that switched from Tymlos. I was having to many side effects..." + (show)
@vickiemazzola

I am about to start that switched from Tymlos. I was having to many side effects with it. Dr. couldn't reduce my dosage of Tymlos because my levels are so low.

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@vickiemazzola my DEXA's were very low (and 7 spinal fractures) but I had excellent gains on a less than full dose of Tymlos. My doc is head of endocrinology at a major hospital and is now incorporating this strategy of lower dose, especially starting lower and ramping up, with other patients. From my experience, you could try that before switching to Evenity. Can you get a second opinion?

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1 reply
candy209 | @candy209 | Sep 16, 2023
In reply to @windyshores "@ymv my belly bulge went away after a few months! I never actually gained weight. Not..." + (show)
@windyshores

@ymv my belly bulge went away after a few months! I never actually gained weight. Not sure what the belly swelling is all about but I have seen several report it.

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Did it go away after a few months of being on the meds? I already have a ton of stomach issues, pain and belly bulge. I hope it doesn’t happen to me once I start tymlos. I go around with my pants unzipped half the time as it is.

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betterbones | @betterbones | Sep 17, 2023
In reply to @ferrer1105 "If you don’t mind my asking, did you see results?" + (show)
@ferrer1105

If you don’t mind my asking, did you see results?

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Yes I did have positive results in the spine, which is what I understand Tymlos primarily addresses. I did not improve at the femur but I did it at the hip. I don't have my numbers right in front of me. But I am a petite female wearing about 100 lb

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mspatart | @mspatart | Oct 23, 2023

I had no luck
Tolerating several
Other treatments but am managing in Tymlos. You can step up the dose so your body can get used to it more slowly which is what I needed. The max clicks on the pen is 8 per injection. I started at 2 and am up to 5 in about 3 weeks. Other users claim that even at 6 Tymlos works. Good luck.

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mspatart | @mspatart | Oct 23, 2023
In reply to @windyshores "@vickiemazzola my DEXA's were very low (and 7 spinal fractures) but I had excellent gains on..." + (show)
@windyshores

@vickiemazzola my DEXA's were very low (and 7 spinal fractures) but I had excellent gains on a less than full dose of Tymlos. My doc is head of endocrinology at a major hospital and is now incorporating this strategy of lower dose, especially starting lower and ramping up, with other patients. From my experience, you could try that before switching to Evenity. Can you get a second opinion?

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Yes I agree I am having luck with the stepped dose approach with Tymlos.

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mspatart | @mspatart | Oct 23, 2023
In reply to @artscaping "@curlylocks and @cireland Good afternoon, wow, I haven’t found anyone on Tymlos. Even my pharmacist said..." + (show)
@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 got on the program through Tymlos manufacturer and receive free medication for 6 months. Check the website for info. You fill out a form and their doctor also has to fill out their forms.

I have had mild side effects and am ramping up my dose slowly. I inject at night. I drink lots and lots of water and that seems to help control side effects.

FORTEO and other meds totally knocked me out of action. Tymlos is working Side effects I have are mild nausea for a few hours in the afternoon, headache on and off but not terrible and fatigue which seems to come and go. Recently having moderate bone pain not bad.

My doc says her Tymlos users all had good results and so far this is the only med I can tolerate.
Good luck

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1 reply
mspatart | @mspatart | Oct 23, 2023
In reply to @mspatart "I got on the program through Tymlos manufacturer and receive free medication for 6 months. Check..." + (show)
@mspatart

I got on the program through Tymlos manufacturer and receive free medication for 6 months. Check the website for info. You fill out a form and their doctor also has to fill out their forms.

I have had mild side effects and am ramping up my dose slowly. I inject at night. I drink lots and lots of water and that seems to help control side effects.

FORTEO and other meds totally knocked me out of action. Tymlos is working Side effects I have are mild nausea for a few hours in the afternoon, headache on and off but not terrible and fatigue which seems to come and go. Recently having moderate bone pain not bad.

My doc says her Tymlos users all had good results and so far this is the only med I can tolerate.
Good luck

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Sorry. AYOUR doctor also has to fill out a form for the free meds.

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