Tymlos side effects I've encountered

The same thing happened to me, especially with my feet. I was severe pain in my hands and feet. I stopped for a while. Tried again same thing happened. Stopped again for a while and then met on the site that you could adjust the dose. I’ve been on a half a dose for months now with no side effects.

I've been taking Tymlos for 10 months. 3 months ago I started losing weight, my liver enzymes are awry, my muscles are declining, and my back hurts! I don't know if it's related or not. I have experienced severe back pain about 10 minutes after taking it several times, but it only lasts 10-15 minutes.

Forgive me, but I do not understand the thinking behind your following statement: "If I ever have to stop taking Forteo, I'll take Risedronate because it is less effective and less enduring in the bone that Reclast or Fosamax." Thanks so much.

susanjohnston,
the bisphosphonates stop the acid producing cells that break bone down. But these bone dissolving cells are attracted to bone that has weakened or fissured and should be replaced. In the natural order the bone is removed and replaced by fresh bone. When the cells that replace bone aren't produced in sufficient number we lose bone density and resilience.
For a long time the only way we had to reduce fracture was to decrease the acid producing cells, while the problem was that there weren't enough cells to replace the lost bone. We didn't know how to increase those bone building cells until Forteo and then Tymlos.
Both of these drugs increase the cells that produce new bone.
Bisphosphonates are pretty amazing. They prevent the osteoclasts-- the acid producing cell from forming the ruffled border necessary for adhering to the bone; the newer bisphosphonates induce death in the osteoclasts and the bisphosphonates adhere to the bone themselves preventing the osteoclasts from attaching.
They attach to the bone for a very long time. They are finding Fosamax remaining on bone ten years after it is taken as a medication.
If you take a drug that builds bone after you take a bisphosphonate, the effect of the bone building drug is less than if you take the anabolic first.
If I had to stop Forteo, I'd prefer a bisphosphonate that had the least effect and stayed on my bones for the least amount of time because I'd always be looking for a way to get back on Forteo or Tymlos.
Susan, I can manage to be pretty unclear. If any of this is questionable, I'm happy to give it another try.

@gently My endo wants me to go on Tymlos. But I have been on Reclast in the past (last dose was 4 years ago). Since, for now, you only get one crack at Tymlos, I’m wondering if it makes sense to hold off on Tymlos until my last Reclast dose is further in the past. Do you know of any research that looked at effectiveness of anabolic with respect to length of time since last bisphisphenate treatment?

(I’ve had no fractures and both TBS and REMS indicate good bone quality.)

wondering1,
my choice would be to go on Tymlos presently.
I have seen an incidental study that may no longer be extant. I can't find it. It indicated that Forteo after a bisphosphonate was as effective after two years as it is for treatment naive patients.
Tymlos isn't the same as Forteo, but similar, as I'm sure you know.
Even without the Forteo study, I wouldn't delay Tymlos. There are doctors currently extending treatment with Tymlos beyond two years. In two years, there will be more physicians prescribing extended use.
Your response may be slower, but won't prevent the drug from being effective, especially in the deeper effect on bone resilience,
After four years you may even have an advantage because what closes the anabolic window it the increase in osteoclasts.

How long did you stay on different levels or clicks before going to the next? Your info is so helpful to us who have problems of drug side effects and makes total sense to have option to begin with lower dose. When I asked my endocrinologist about it, she replied there was only one size of dose. Why are they not onboard with this?
Again, thank you

One approach is to start in the middle, let's say four clicks. If that goes well, the next day, try five clicks, and so on. If five clicks really bothers you, go back to four and stay there for a few days, then try again.

Thank you so much. I did the full dose first time last night. I had a bad headache when waking but has lessened during the day but the lightheadedness has stayed. I know I am on other medication that has same symptoms but this made it worse so I will do the half tonight. Just have to be able to take this for I need to rebuild bone after four vertebrae fractures in three months.
Thank you again!

In reply to @stress101 "@gently I actually did start to use the pen at .60 (six clicks) and I have..." + (show)
from the archives of windyshores | @windyshores | Oct 3, 2022
I started Tymlos at half and then full dose and ended up in the ER. Had afib, but also was dizzy, headachy, pain all over, nausea- lots of side effects.
I stopped, then met with docs, then restarted at two clicks out of 8 (my idea). I slowly went up over two months, to 7 clicks, where I have stayed for a year. This really minimized side effects. Many days I have none at all.
I have found that hormonal drugs like this (and my cancer med too) have more side effects at first and they change and even lessen. But my full dose attempt created a cardiac side effect that was serious.
With fractures and a committed desire to avoid further pain and disability, I was determined to get back on and have not suffered any significant side effects with this ramp up plan.
That said, Forteo was intolerable for me and does not have an adjustable dose. I have not tried Evenity but that might be an option for you.
Or....you could try two clicks of Tymlos and see what happens, then go to 3, then 4.....and so on!