A year on Tymlos . . .

Posted by anewyorker @anewyorker, Feb 13 11:11am

Hi all,

Thought I'd report in, since there's a lot of interest in Tymlos.

I've had osteoporosis for about 25 years, thanks to a hysterectomy at 50. I took Fosamax for about 8 yrs, then went off. I stupidly did nothing for several years, then saw an endocrinologist, who put me on Prolia for three years. I tolerated it well but didn't see any improvement in my bone density scans (spine was the worst, about T score of -3.4 SD). She suggested switching to Tymlos, but the cost put me off.

In Oct 2023 I tripped over the damn vacuum (that'll teach me to clean), had a bad fall, and wound up with a compression fracture at L1. In Jan 2024 I went on Tymlos and have taken it faithfully since then.

I had a DEXA scan yesterday, and my spine has improved to T -2.6, which is fantastic. Everything else stayed pretty much the same, but they were never that bad (e.g., hip still at -2.1 ); for obvious reasons, my spine was the biggest concern. I have other spinal problems, including arthritis, spinal stenosis, and a couple of bulging disks and resultant nerve impingement, so I have pain when I'm on my feet for more than a few minutes, but at least structurally I'm now in a better place.

The plan is to continue Tymlos for another year. Then we'll see. She is a proponent of Prolia, esp now that you can stay on it for much longer than was recommended a few years ago. I'm 78, so I guess she figures why not, if it will prevent deterioration once the Tymlos has done its magic?

Anyway, that's my story. Right now I'm celebrating.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

anewyorker | @anewyorker | May 19 10:41am

Hi Susan,

I don’t know whether she’d do this, but I’ll send her an email and find out!

Hope you’re ok.

anewyorker | @anewyorker | May 27 11:08am

In reply to @susanjohnston "Do you happen to know if your doctor can do a tele-health consultation in California? Thanks..." + (show)

Hi @susanjohnston,

I did ask my endo whether she'd do a telehealth session with you, and she never responded. I guess I'm taking that as a no. I'm sorry it didn't work out.

susanjohnston | @susanjohnston | May 28 10:26am

Thanks so much for asking.

bboon55 | @bboon55 | Jun 12 6:34pm

My T score in the spine went from -3.1 to -2.1 after 7 months on Tymlos. I am thrilled. I was already taking calcium and vit D3 w/K2. I had been tested thoroughly by an endocrinologist for hyperparathyroid and other congenital causes, all negative. I also went back on estrogen and progesterone, plus some testosterone cream. I have a lot more energy and mental focus.

anewyorker | @anewyorker | Jun 12 9:02pm

In reply to @bboon55 "My T score in the spine went from -3.1 to -2.1 after 7 months on Tymlos...." + (show)

That is fantastic. You must be ecstatic.

Will you stay on Tymlos and hope for further gains? Or switch to something else?

njx58 | @njx58 | Jun 13 7:28am

In reply to @bboon55 "My T score in the spine went from -3.1 to -2.1 after 7 months on Tymlos...." + (show)

Nice! I had identical results. I'm now 14 months into it. The plan is to stay on Tymlos for at least 18 months, possibly even the max of two years. Then, I'll need to follow up with Reclast or Fosamax.

jackieo1919 | @jackieo1919 | 4 days ago

Any side effects from Tymlos? I am possibly going to be using a new drug since my insurance shot down Forteo for my 2nd year due to office didn't send in authorization.

anewyorker | @anewyorker | 3 days ago

In reply to @jackieo1919 "Any side effects from Tymlos? I am possibly going to be using a new drug since..." + (show)

@jackieo1919 Hi Jackie, I had some side effects from Tymlos but nothing horrible. I occasionally got a short-lived rapid heartbeat and some occasional nausea that lasted a maximum of an hour or two. That stopped when I changed the time of day for the shot, from early evening to just before bed; don't know whether that's a coincidence or whether my being in bed made a difference (not sure why it would).

I'll be going off Tymlos in January (after two years). My endo wants to put me back on Prolia, since I'm old (almost 79) and apparently the latest guidance is that you can stay on it for ten years, so she probably figures what the hell? I'm concerned because i have decades of dental problems, and I worry about necrosis, but I don't seem to have a choice--all the other options, whether Reclast or Fosamax, carry that risk too. I can't take Fosamax (it gives me really awful GERD), so it's Prolia or Reclast, which scares me. So I'll close my eyes and hope for the best.