1. < Osteoporosis & Bone Health

Struggling with Tymlos medicine

Posted by darla1 @darla1, Sep 1, 2023

Hello, I’m turning 55 this November , was diagnosed with late stage osteoporosis, started Tymlos 2 weeks ago, with immediate side effects from the very first dose. My dr has had me start with 80, 8 clicks. I’m 105 lb soak and wet. My bones hurt before I began Tymlos, now the pain has become excruciating in my bones, muscle weakness, heat palpitations after each dose, headaches that never go away, and change in my mental health.
I see my Dr for the first time since beginning Tymlos next week. Which I will discuss the issues I’m having.
Has anyone made it through the 2 years? Did the drug improve their bone density? I guess what I’m asking ,
Is this worth what I’m putting myself through mind, body, and soul?

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me75 | @me75 | Sep 4, 2023
In reply to @ssapp1 "@darla1 -I was on Tymlos for 2 years and did really well with it. I never..." + (show)
@ssapp1

@darla1 -I was on Tymlos for 2 years and did really well with it. I never did full dose because I didn’t realize you could have different doses. The only side effect I had was dizziness, so I took it at night. I have also been Evenity, prolia, and now Forteo. Out of all of those I had the best luck and gains with Tymlos. I will probably go back to it.

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I took Prolia three years ago and lost some of my jawbone and had to have surgery done on it, it only affected the inside of the jaw and not the outside. the bone became so soft and thin that it could through my gums if I pressed on them . I will tell anyone to DON'T TAKE PROLIA you never know if this can happen to you.

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pulane | @pulane | Sep 5, 2023

I have taken Tymlos for a year and still lost density , although specific to my left forearm (rest of measurements same as last scan). Discouraging. I will be seeing a PA soon and let you know what she says. The dr is booked until summer 2024, that is also discouraging. Yet I know Tymlos helps some folks. Every body is different. So it is hard to give the 'right' advise.

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2 replies
windyshores | @windyshores | Sep 5, 2023
In reply to @pulane "I have taken Tymlos for a year and still lost density , although specific to my..." + (show)
@pulane

I have taken Tymlos for a year and still lost density , although specific to my left forearm (rest of measurements same as last scan). Discouraging. I will be seeing a PA soon and let you know what she says. The dr is booked until summer 2024, that is also discouraging. Yet I know Tymlos helps some folks. Every body is different. So it is hard to give the 'right' advise.

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@pulane just curious, had you taken another medication before Tymlos that might have affected Tymlos' effectiveness? Did anyone test CTX and P1NP to see if the drug was workin? So sorry! Can you try Evenity

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sarahstuart Sarah Stuart McIlvain | @sarahstuart | Sep 8, 2023

I'm a big woman and have no trouble with Tymlos (other than the cost). However there is a vigorous discussion about lower the amount you take on this site. Do listen and follow the wise women!

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1 reply
darla1 | @darla1 | Sep 8, 2023
In reply to @sarahstuart "I'm a big woman and have no trouble with Tymlos (other than the cost). However there..." + (show)
@sarahstuart

I'm a big woman and have no trouble with Tymlos (other than the cost). However there is a vigorous discussion about lower the amount you take on this site. Do listen and follow the wise women!

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I have amazing insurance through blue cross blue shield . My dr told me about the Tymlos saving card through CVS specialty pharmacy. My Tymlos is absolutely FREE, for the first 11 months , then $500 per month with my insurance.
I suggest everyone checking that out😁

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1 reply
gently | @gently | Sep 11, 2023
In reply to @pulane "I have taken Tymlos for a year and still lost density , although specific to my..." + (show)
@pulane

I have taken Tymlos for a year and still lost density , although specific to my left forearm (rest of measurements same as last scan). Discouraging. I will be seeing a PA soon and let you know what she says. The dr is booked until summer 2024, that is also discouraging. Yet I know Tymlos helps some folks. Every body is different. So it is hard to give the 'right' advise.

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Have you been tested for hyperparathyroidism? https://www.parathyroid.com/hyperparathyroidism-diagnosis.htm
You might ask the PA for serum calcium and ionized calcium. You could order the tests yourself through PrivateMd, but then your insurance wouldn't cover costs.

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1 reply
pulane | @pulane | Sep 11, 2023
In reply to @gently "Have you been tested for hyperparathyroidism? https://www.parathyroid.com/hyperparathyroidism-diagnosis.htm You might ask the PA for serum calcium and..." + (show)
@gently

Have you been tested for hyperparathyroidism? https://www.parathyroid.com/hyperparathyroidism-diagnosis.htm
You might ask the PA for serum calcium and ionized calcium. You could order the tests yourself through PrivateMd, but then your insurance wouldn't cover costs.

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No, I haven't been tested, will talk with my GP about this. I am taking no other drug (maybe I am taking too much calcium pills). Thank you for suggestion!

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gently | @gently | Sep 11, 2023

Tymlos is known to increase bmd in forearm. Hyperparathyroidism is known to decrease forarm bmd. If your calcium levels have been high or fluctuating that would be a third clue. Then you would only need the ionized calcium. Even with high calcium intake, serum levels should remail fairly constant and below 10. It would be rare for a PA or even a PC to understand diagnosing hyperparathyroidims. If ionized calcium is abnormal, you might want to see an endocrinologist.

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mspatart | @mspatart | Oct 26, 2023
In reply to @gently "darla1, some patients start at a low dose and reach 8 clicks after several weeks, giving..." + (show)
@gently

darla1, some patients start at a low dose and reach 8 clicks after several weeks, giving their body time to adjust, some stay on 6 clicks for the duration, some simply can't tolerate Tymlos. You might be allergic to the preservative in Tymlos. One patient after quitting the drug said sweetly, "I started laughing again."
We are supposed to do what our physicians tell us, but If you can't contact your physician over this holiday, I'd suggest that you take a drug holiday.
There are other drugs.
You are taking the same dose that 160, 170 180 lb people are taking. I think that we (100lbs here, yes soaking wet) are over dosed.
When I decided on Forteo 5 months ago, one consideration is that the Tymlos dose is 4x the medication that is in Forteo. And the gains are similar enough that both companies can claim higher gains It makes sense to me that with a higher dose there would be more side effect. Another consideration was the preservative in Tymlos.
I don't have any side effects with Forteo. Of course that doesn't mean you wouldn't. Some can't tolerate Forteo and are fine on Tymlos.
I admire your fortitude. But I don't think that Tymlos is the drug for you. Some people suffer through and have good gains, others suffer through and have no gains. If Tymlos were your only choice it might be worth the suffering.
I'm glad you are seeing your physisican soon.

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I totally agree. The only way I can tolerate Tymlos is to ramp up the dose. I started at 2 clicks and am up to 5 with some but minimal side effects that I can easily manage with nausea medication, occasional pain pills and lots and lots of water. I feel so sad for people who were not advised to use Tymlos this way because it really works.
Good luck to everyone on Tymlos.

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mspatart | @mspatart | Oct 26, 2023
In reply to @ssapp1 "@darla1 -I was on Tymlos for 2 years and did really well with it. I never..." + (show)
@ssapp1

@darla1 -I was on Tymlos for 2 years and did really well with it. I never did full dose because I didn’t realize you could have different doses. The only side effect I had was dizziness, so I took it at night. I have also been Evenity, prolia, and now Forteo. Out of all of those I had the best luck and gains with Tymlos. I will probably go back to it.

Jump to this post

Me too,
Forteo and all the others with no adjustable dose were horrible. Tymlos is WORKING HOORAY! I got lots of encouragement from Windyshores too and it really encouraged me to keep trying. THANKS SO MUCH. PatJoh

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