A year on Tymlos . . .

Hi @anewyorker very nice results for one year treatment of Tymlos, i'm happy for you! You mentioned that you were on prolia before tymlos. Were there any drug holiday in between the two meds? Or, did you start tymlos 6 months after the last shot of prolia? Thanks

Hi mayblin. To answer your questions: no, there was no drug holiday between the Prolia and the Tymlos. I'm aware now that there is research suggesting that it's not a good idea to go on Tymlos directly from Prolia, but it doesn't seem to have been a problem for me.

I have no explanation for why I seem to have exceeded expectations on this. I'm going to see my endo in a few weeks, and I plan to ask her if she has a theory. She is the director of the Bone Metabolism Program in the Division of Endocrinology at Lenox Hill Hospital, in New York, and much of her practice is treating osteoporosis, so I doubt she's not aware of the literature. I'll be interested in hearing what she has to say.

Yes, studies indicated prolia followed by tymlos/forteo was not a good idea as evidenced by loss of bmd. But that doesn't matter, it worked for you and that is wonderful! I wonder if your prior use of fosamax was a factor. Could you keep us updated as to what your endo has to say about this?

Thank you so much for your info. I have been on Tymlos for about 6 months. Doctor said I was a Boniva failure as I have had 3 compression fractures while on the Boniva. I inject the Tymlos into my belly fat while standing. I don't spend a lot of time thinking about it, just inject, count to 10, and pull it out. I have not even looked for bubbles but given so much valuable info here, I am going to check from now on.

@anewyorker Those are amazing results and I’m so happy for you! Did you do anything in addition to Tymlos such as certain exercises, diet or supplements? Thanks.

Hi to all,

Bluebonnet242, no, I didn't do anything special. I take two Citracal tablets with vitamin D every day, no other supplements, and do some low-impact exercises for those nasty spinal conditions--stretching, modified planks and wall pushups, some easy core exercises like sit-to-stand, and some others. And I try to walk for anywhere between 35 and 50 minutes a day in my apartment, with the aid of a cane; it varies depending on how quickly the pain becomes a problem. I try to do all this stuff maybe five times a week. But these exercises were given to me by a physical therapist for the spinal problems and not by my endocrinologist.

No idea whether the Fosamax helped avoid the Prolia-to-Tymlos problem. I had to stop it because it made my GERD much, much worse, even though the gastro guy didn't find anything alarming when he did an upper endoscopy. I was just too miserable to stay on it, and the compression fracture kind of sealed the deal.

This is the most complicated business to live with, isn't it?

Adam08, I'm like you. I take the shot every evening at around the same time and just sort of do it on automatic pilot. Takes maybe a minute.

This is such a complicated disease to manage, isn't it? I wonder why, after all these years, there are still so many questions about how to handle it.

Thanks for the reply! Osteoporosis is certainly a complicated disease to manage. If it was primarily a man’s disease, there could be a cure by now 😀

I’m sorry about your spinal issues and can’t imagine the pain you are in every day.

Thanks for your compassion, Bluebonnet242. The worst of is how it limits what I can do. I’m in good health overall and am incredibly lucky in that regard. But it’s frustrating to be so limited!

I had success with Tymlos. I am 68 years old.
One day while lifting weights, my spine collapsed in three places, Horrible pain. I had a Dexa Scan which showed severe osteoporosis. -4.5
After my diagnosis I checked out a half dozen books from the library.
I learned I needed to change my diet and more importantly I needed to find out WHY.
I started taking Algae-Cal right away. It took me awhile but I finally got into see an endocrinologist.
She ran all those test. Nothing stood out as a cause. She thinks it hereditary.
But she did put me on Tymlos. Though it took months for my insurance to allow it.
Long story short. One year later. One year of Algae-Cal and three months of Tymlos, my Dexa scan improved from -4.5 to -3.6.
Needless to say, my doctor was VERY impressed.
I hope my success continues. I hope everyone does too.