Tymlos side effects

@tymlos666
Hello, thank you so much for your message, I too micro dosage to half of the full click, I was having such bad side effects; the palpitations, the flue like symptoms, etc., it took a kind and caring fellow trainee MD to convince my endocrinologist to try reducing the dosage, they don’t like to advice you to reduce it, they say the clinical trials were for the full dosage, blah, blah! But how can they even think that one dosage fits all! Like you, I am petite and the full dosage felt like a horrible blast! Did you half dosage throughout the entire two years? Your message has given me so much hope, thank you! ❤️
Consuelo

@tymlos666 Where did you see that use of Tymlos can now exceed two years? Any chance you can find the link and post that for us? I just checked their official website, and it still says 24 months.

My rheumatologist told me there is no longer a two-year limit on Tymlos . He’s is a very smart man and the head of rheumatology at my hospital so I’m pretty sure he knows what he’s doing !

@ccduplass no, not for the two years. I started off with a full dose. Had to stop because of all the pain. Started again stopped then somebody posted on the site about adjusting the dose so I did without asking the doctor. My DEXA scan showed improvement especially in my lumbar spine, …

@tymlos666 Not doubting his being smart, but please research Tymlos further yourself regardung the 2 year max. Best wishes!!

My legs ache specially after the injection at night, it usually goes away by the following morning or is very mild when present throughout the day

@cathyf31, the black box restricting more than two years use was lifted int 2021. Guidelines remain because there was no rigorous testing of Tymlos for longer than two years. Doctors are not required to follow guidelines, as they are just general guides. Many drugs are prescribed off label. Tymlos is becoming more frequently prescribed in this fashion.
Lots of literature remains on the net long after it was initially thought to be true. University websites are particularly remiss at updating and they often don't contain source listing or dates of publication.

@gently OK, I was aware that the Black Box warning for the osteosarcoma from the rats was lifted, I misinterpreted your previous comment on this string that the 2-year max limit had also been lifted. I believe the two year limit for forteo has actually been lifted, but not for Tymlos. My endocrinologist is not okay with any off label Tymlos prescribing. Sure would be nice to get a statement out of Radius saying that "at the doctor's discretion," doses and time (if that's the case yet) can be adjusted to help give prescribers more confidence and flexibility.

Cathy,
I should have known that you were aware because your posts show that you are on top of this terrible game.

Tymlos and Forteo seem to reach a point of diminishing returns (at about 18 months) --where CTX advances beyond sufficient P1NP needed for recovery . Any one extending treatment would want to watch bone markers.

I have the idea that the shift is because of the reduction in PTH that follows administration of the Tymlos or Forteo PTH injections.

@cathyf31
I did research it after your message. I don’t know how to show you what I found, but Thankfully my doctor is accurate.