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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kinglor | @kinglor | Apr 16 8:54am

I had no improvement after 24 months.

windyshores | @windyshores | Apr 16 9:00am

In reply to @kinglor "I had no improvement after 24 months." + (show)

Aw @kinglor that is terrible. Does the doctor have an explanation?

me49 | @me49 | Apr 17 5:38am

In reply to @kinglor "I used Tymlos without side effects but after 24 months it did not improve my OP..." + (show)

Hi, kinglor,

I think that doctors should monitor bloodwork markers more frequently when prescribing Tymlos, Evenity, Fosamax or any other osteoporosis medications to see that it's working to build bone. Every 3 to 4 months would be good and meds could be changed if they prove ineffective.

windyshores | @windyshores | Apr 17 8:59am

In reply to @me49 "Hi, kinglor, I think that doctors should monitor bloodwork markers more frequently when prescribing Tymlos, Evenity,..." + (show)

@me49 my docs don't seem to feel that bone marker blood tests tell everything about what is going on. There may be other tests to do, but DEXA would be the best way to see if a drug is working, perhaps. Even then, improvements in bone quality may be happening, not density, that would not be picked up.

The real problem in my view is that there is lack of knowledge, lack of funding for studies.

franie | @franie | Apr 17 10:33am

I am starting in my second month of daily shots of 80 and tolerating it. I had severe headaches the first ten days and then they dissipated and have had no issues since. There are many patients that tolerate a lower dose daily. You are pretty small for that large of a dose as I am 125 pounds. I had compound fractured ankle and fracture lines were not knitting together . I get X-rays in a month so am anxious to see if it is healing . I wonder if your dose was reduced It would have less side effects . At first the headaches were awful. Good luck

windyshores | @windyshores | Apr 17 11:39am

In reply to @franie "I am starting in my second month of daily shots of 80 and tolerating it. I..." + (show)

@franie your post is so important and helpful. You persisted for 10 days. These meds work with PTH hormones and it dose seem our bodies adjust, whether through (heroic) persistence like yours or temporarily going down and ramping up. I hope your post makes people feel less afraid when they DO have a side effect. Thank you for posting this!

me49 | @me49 | Apr 17 6:22pm

In reply to @windyshores "@me49 my docs don't seem to feel that bone marker blood tests tell everything about what..." + (show)

Neither does a Dexa. It's unfortunate that insurance drives what doctors can and cannot recommend. Patients should not have to wait two years before they know that a drug is or is not working. There are no easy answers.

windyshores | @windyshores | Apr 18 7:22am

In reply to @me49 "Neither does a Dexa. It's unfortunate that insurance drives what doctors can and cannot recommend. Patients..." + (show)

@me49 this is what I wrote:

"There may be other tests to do, but DEXA would be the best way to see if a drug is working, perhaps. Even then, improvements in bone quality may be happening, not density, that would not be picked up."

We don't have good answers that all docs agree on. Lack of money for research. This is mostly a women's disease!

rajmayo22 | @rajmayo22 | Apr 18 8:12am

I am on Tymlos for 18 months. Around 12 months. I asked my Endo a prescription for DEXA knowing that insurance companies pay for DEXA every two years only. I talked to my insurance provider and was able to get DEXA at the time because I was under treatment. I don't know the insurance code on a DEXA prescription. Try if this option works. Good luck!