Just Finished 18 mos on Tymlos and....

Thank you.

You must be very disappointed. I will find out my scores in May after being on Forteo for almost two years. Does anyone have any statistics about taking one Reclast infusion vs. Fosomax continuously after Forteo or Tylmos to hold bones. I took Fosomax with no difficulties from 2003- 2008, so I am not afraid of it.

What dose did you take daily

janflute, I would be interested in understanding your dxa scores and your follow up drug. I'm starting Forteo on Monday. I was on alendronate (generic fosamax) 2014-2019. Have been on drug holiday April 2019 until today (5 yrs). I have read anabolic drugs work better as first course vs a bisphosphates. My doctor feels I will still see benefits. She also wants to follow up with Reclast but is ok if I choose alendronate again.

Hi, I did the full 8 clicks. I have an upcoming appt with a new rheumotologist in the beginning of May. Will update then.

After 12 months on Tymlos, my scores have improved greatly

5/1/24. -2.8. Osteoporosis. Left femur neck
5/8/25 -2.2. Low bone mass " "

5/1/24. -3.0. Osteoporosis. Left femur total
5/8/25. -2.4. Low bone mass. " "

5/1/24 -3.1. Osteoporosis. AP Spine
5/8/25. -1.8. Low bone mass " "

My doctor is very pleased with how well Tymlos is working for me.
I have had six spinal fractures in a span of two months, two surgeries.

So far there have been no side effects. I do have the belly fat. But I also lost 3" with all those (excrutiatingly painful) breaks. The skin has to go somewhere. Unfortunately, the nature of gravity says down, not up........

If you can stay on it and have a dexa every year to track your numbers, I would do that.
Give it time to work and hopefully, you will get great results also.

I will finish my two year treatment in March 2026 and am hoping to have even greater overall results.

I will still have to go on something at the end of my Tymlos treatment. I haven't done much research on that yet but will listen to my doctors suggestions. I have a long way to go. My head drops forward causing imbalance and discomfort, difficulty breathing and swallowing. I have a terribly hunched back and am considering rods to straighten it. My bones have to be strong for rods. The bones need to be able to hold the screws......so, I'm staying on Tymlos.

Good luck to you.

You have definitely been through it! Congratulations on improving your bone quality. I have improved on Tymlos as well, I’m almost 9 months in so far. My doctor is THE bone doc in the Central Florida area, and it was a miracle that I was able to become her patient. She has told me previously a Reclast infusion after Tymlos is done (1 or 2) then a medication holiday and close eye on. I hope you get your answers and continue to get stronger!!

Jennirdh, would you share your doctor's name? I'm in SW Florida, but have been unable to find a bone expert. Thank you!

I have heard of the "holiday" but am leary of it.
My bone doctor said my sudden drop in density was caused by stopping prolia in preperation for a dental implant.

I was being treated by my GYN and was told by her PA to go off the Prolia before the dental work, then get my next shot immediately after. I was due for my six month dose, a few weeks after the dental work. In that short time my bones
weakened dramatically. A trip to the ER showed a fracture, I had surgery on that one. Then four more fractures immediately after.

For that reason, I'm petrified of a "holiday". But I cannot stay on the Tymlos longer than two years.
I now see a bone specialist and am anxious to know what treatment she advises post Tymlos. I've heard reclast can be a once a year drip or twice a year injection. I'd love once a year. Is that for the rest of your life or is there a maximum time for Reclast also?

There's no Prolia holiday. The way it works, if you stop, the rebound effect will cause rapid bone loss. You cannot stop Prolia and not take any more drugs.

Drugs like Fosamax and Reclast are different. You can have holidays with those, during which you'd be monitored.