Has anyone been using Tymlos?

Also hoping you got some positive results from 18 mos. On Tymlos Windyshores… hoping for calm shores for your bones.

I tried one injection and had such a severe debilitating migraine I nearly had to go to the ER. Never again.

Has anyone experienced low sodium levels as a result of Tymlos?

My story: I began Tymlos in late Dec 2022. I tolerated the shots well. Or so I thought. After 60 doses, my doctor did follow-up blood work and found that my sodium had fallen to 129 [it was normal before I began Tymlos]. This is the first time my sodium has been out of normal range, ever. I began to feel unfamiliar symptoms starting a few days before the blood draw: headache, nausea, loss of appetite, lethargy, drowsiness, fluffy-headed. After the lab results came back, it was clear that my symptoms were due to low sodium. Since I had made no changes to my diet or meds (I don't take any except vitD3 and calcium) my doctor thought Tymlos was the likely culprit and took me off it immediately. My symptoms, quite brutal, continued for 5 days beyond stopping Tymlos before resolving completely. My sodium level, though, took nearly a month to normalize. All I did was get off Tymlos; I didn't take any meds or make any dietary adjustments.

My doctor is convinced that this episode was due to Tymlos and doesn't want me to get back on it. This was his first experience of Tymlos causing fallen sodium and he has reported it to the FDA.

[Aside: the doc monitored a host of metabolic markers weekly while watching my sodium. A few others were also off, e.g. my alkaline phosphatase shot up, so did a couple liver markers. All these were normal before I entered the Tymlos tunnel, and are all back to normal now.]

I was wondering if the community knows of other instances of this side effect of Tymlos.

Thanks.

I just started today and will be glad to share my journey with anyone who is currently taking or thinks they will be taking this drug. I am 63 in good health, lean, athletic, etc. I was on Actonel, which didn't really help.

I was as hesitant--for all the obvious reasons-- as everyone else on this site to start the injections, but here we are.
Day 1: I started with 1 click this morning and plan on staying with 1 click for at least a week. I might even do 1 click every other day. I take everyone at their word when they say ramp up slowly. My injection site turned red (very small red zone) and now, late in the afternoon, is still a bit sore. The red is fading. I think I am going to alternate between belly and thigh to give each body part time off. Most people say they don't feel the needle going in. I totally felt it. I hope this helps people out there looking for boots on the ground information.

I started Tymlos about 2 weeks ago. A few days ago, I awoke to a swirling room. With great mind over body control, I got myself to a swimming pool for water aerobics. I called my doctor and didn't have to wait long for a work up to see what was going on. The team could find nothing that related to Tymlos, but reported it anyway. I will start Physical Therapy next week for vertigo. All of this is in preparation for my 80th in 6 weeks.

Thank you for sharing this, and I'm so sorry you experienced it-- but good job on the water aerobics! Even though your doctors found no correlation with Tymlos, it's hard to think (even wrongly) that it isn't involved. I think that's only human: you think-- I've lived 80 years without this happening, and now, two weeks into a new drug, I get this. Good luck with PT. I hope you find a solution to your vertigo and that you can continue Tymlos if that is the plan.

Finishing up first week on Tymlos. First day experienced a terrible headache. All good days 2-5. Day 6 the morning after shot, I had an episode lasted about 20 minutes- severe jaw pain. Anyone experiencing this?

Hi. I see your comment is from 2019. Did you start on Tymlos? How did it go?

I'm confused on all the references to 'one click, two click' stuff as I was put on Tymlos back in Oct. and told 'dial it to 80' period. I've also had some red spot pin prick soreness and def feel the needle going in too...as I think I do it too slow.
Also have had vertigo sporadically and initially had hair loss (about a brush a week) but that's tapered off...

Biggest prob right now is I've ended up w/some neuropathy as in 'tingling toes' and numbness which to me seems like a 'fall risk' as I'm an athlete, 63 as well and don't want to make my circumstances worse! I asked to be switched to Forteo right away as it was a 'gold standard' etc. but insurance wouldn't let me due to 'expense' so I'm stuck on Tymlos...and have adapted. It's a shame when insurance companies control healthcare...doc said I'd have to prove worse 'adverse reactions' for them to switch me over as they need 'substantiation'

Hi, Elizabeth-- The guidance I got from my Dr--and from everyone on this site-- was to ramp up slowly. It seems to lessen the side effects for many people by letting your body get used to the drug. Many people on this site have also reported that they can tolerate, for example, a 6 but not a 7. A lot of us have been instructed to play around with the dosage to see what you can take on the theory that something is better than nothing. Who knows what the Dexa will show after all the fiddling. I'm sorry insurance is dictating your care. That's terrible, but it is the reality we live in. I hope you find a solution to your neuropathy.