Has anyone been using Tymlos?

I just found out that tymlos raises your heart rate and I took an EKG this afternoon and need to see a cardiologist. I don’t see the same side effects with the raised heart rate. My dentist believes I have osseonecrosis so besides not getting any gains from the Prolia I’m not sure if I can go in this. So very frustrating.

I meant from Forteo.

@lauijodrik I have afib and had two years on Tymlos. During those two years, yes my heart sped up briefly but it was the first time I went two whole years with NO afib.

That said, with Froteo, the increased heart rate made me dizzy and short of breath and I could not tolerate it.

As I said, an advantage with Tymlos is that the pen is adjustable and you can start at a lower dose. Even lower doses have an effect but many of us get up to 3/4 dose at least and do well.

I'm male, so we seem to be a smaller category of people with osteoprenia and full osteoperosis.

I was very nervous about taking tymlos and somewhat in denial about the osteo issues until a scan was done showing I had multiple prior fractures in my spine including the one that actually brought all of the osteo issues into the forefront. I had thought, oh, I pulled a back muscle all those prior events, until the day I lifted a little 30 lb box to put it on a scale and my T12 cracked.

There are people who have commented tymlos gives them adverse reactions they can't tolerate well, and then they get permission from their doc to reduce the dose, or even take a medication holiday.

Not a good idea. Tymlos has about a 24 hour half life in your body. After that it's not working because it is no longer there. Once that happens, the bone destruction continues and you will lose all the prior effort you made by taking the drug in the first place. That's a NO win strategy and a waste of money and effort. I was a bit shocked at hearing some folks say their doctors approved reducing the dosage or even taking time off. LOL. I find that crazy and very bad advice. So I am an unusual voice by saying this, but the fact is, either you take it, or you don't and at the correct dosage prescribed.. or you are wasting your time and effort and money hands down. Best to try to find an alternative treatment in such a case.

I have minor reactions.. maybe a slight headace or tiredness, so I usually take a nap after the injection. Compared to some others.. I am lucky for sure in this problem.

I also apparently had zero testosterone, so I am now taking that as well.. yes, it affects bones. Don't have a clue yet in regard to side effects since I'm only on dose number 2 so far. But anything that might add to the bone building program I'm open to it. So guys, have your tostosterone levels checked FYI.

Hope someone finds this helpful. Bone loss has nasty and painful issues no one should have to suffer, ever. I wish you all success in beating that back and fighting.

Kind regards.

JG

@data2net you may be misunderstanding the posts about lower doses. That is a method to help get onto a therapeutic dose. Some of us small females also do well on a slightly reduced dose.

I believe people should try a full dose but going down to a lower dose and then letting the body get used to the drug so it is possible to go up, it a lot better than quitting.

Perhaps you have not experienced sensitivities to meds. My doctor is a top world class endocrinologist and has been with me for many years while I tried to get on medications. He is happy with the method of lowering the dose and titrating up, and uses it with other patients. I did not ask his permission: I told him after the fact. He prescribes lower doses for me for many meds.

I never did a full dose. The highest I got was 7 out of 8 clicks on the pen. I had a 20% gain in spine going from severe to borderline.

Also, my doctor has said it is okay to take some days off.

We try to share experiences here and not tell anyone else what to do. I hope you can do well on a full dose but understand that some of us cannot start there. We need to get onto a therapeutic dose (my doc was happy with 3/4 dose) any way we can.

data2net,
you may be misunderstanding the posts about lower doses; you may be misunderstanding the mechanism of action of Tymlos as well as the package insert for the medication
The not a good idea paragraph is not a good idea. You may want to delete it. The half life of Tymlos is 1.7 hours. Destruction doesn't resume at the half life or even after twenty four hours. I accept your shock as
accurate-- you're laughing at the medical advice from our endocrinologists and calling it crazy and bad. That voice is unusual.
Otherwise, welcome to Connect.