Struggling with Tymlos medicine

@summera1 Hi. I also struggled with Tymlos side effects right out of the gate with the full 80 mcg dose. With my health provider indicating she thought I needed to stop the medication, I pushed for her to allow me to reduce the dose down to four clicks (half-dose of 40 mcg). She was uncomfortable, but allowed me to do so. I created my own plan to stay at the 40 mcg for 10 days, and then titrate up one click (10 mcg) after 10 injections at each level. My body did react to the first couple of injections with each increase, but then settled down. I am currently up to six clicks and am having issues again. I will try to stay at this level longer than the 10 days or I (more likely) may need to drop back down to five clicks for a while. I just think my body is going to need more time to adjust, as I am ultra-sensitive to most medications on the face of this earth. I just repeated labs, and I'm waiting for my CTX result. My P1NP went from a baseline of 52 to 93 (after 19 full + 4 half doses) and it's now up to today's result of 128 (with the last increase representing the reduced 10-day doses of 40 to 60 mcg). I'm curious to see what my CTX is so I can calculate the P1NP : (CTX/1000) ratio to see if I'm truly building bone (aka anabolic).

My doctor recommended 80 once a day that is what the indications show on my box

Incremental dosing with Tymlos really has been a patient driven revelation. The doctors suggesting starting at a lower dose have been listening to their patients. Even some of the Radius reps are advising the gradual dosing.
Both 40mcg and 80mcg showed steady bone density increases in the phase 2 trials. 80mcg is more robust and was chosen for the marketed product.
Some patients advance the amount gradually giving their bodies time to adjust saving themselves early adverse side effects, eventually tolerating the 80mcg. Other patients would be unable to tolerate Tymlos at 80mcg settle somewhere between 40 and 80 and experience satisfactory increases in bmd.

I started with 2 clicks, based on informative posts from this message board. My doctor fully supported this and the first dose was in his office. Over 2 weeks I gradually increased the dose up to 8 clicks. No side effects and it’s been over a year.

My endochronologist suggested Prolia after 11 months on Evenity, but I have autoimmune issues & the side effects sound awful. While researching options, I'm on 70 mg of Fosomax with no side effects. Starting Tymlos in 2-3 weeks (need to check coverage) & I'm frightened, since I have fibromyalgia. Recommendations appreciated. Thank you!

@lisaberkowitz As others have posted, I would recommend titrating up gradually on the medication. My doctor told me there wasn’t such a thing as titration, but I did.

I started at 40mcg. I did that for 2 days without side effects, so I moved to 50mcg. At 50, I had a pressure sensation (no pain) down my spine and in both hips. I stayed at 50mcg until that subsided (3 days), then increased the dose. Within 10 days I was up to the full 80mcg without side effects other than the heart palpitations right after the injection. That too, has now gone away. Good luck!

@bharris202 Thanks so much for your response & reassurance. My metabolic bone specialist said the dosage could not be adjusted lower to start, but the posts have given me the confidence to give it a try. Thanks so much!!!!!!!

@ssapp1 Did you gained weight during your treatment?

@lisaberkowitz You bet! Mine said the same thing. It’s not like you want to take/stay on a minimal dose forever…you’ll work your way up. They (doctors) just need to show some grace to patients. I also recommend hydrating really well. I’ve seen lots of concerns about headaches, dizziness, and low blood pressure. If you had those issues without Tymlos, I think it might be related to blood pressure which often can be overcome by proper hydration. It can’t hurt to hydrate more as you start Tymlos to see if that will offset some side effects. You’ve got this!!

@lisaberkowitz
Tymlos is one of the best at not exciting autoimmune systems. One of the side effects for many with Tymlos is joint and bone pain. This can diminish over the first few months.
Consider starting a low dose testing your tolerance and giving your body time to adjust.
One thing about Tymlos is that you can stop taking the drug without penalty. There isn't rebound and it doesn't have to build up in your body to be effective. It leaves your body quickly so you don't suffer for a long time if you stop taking it.
You are getting the best responses for starting at a low dose. Some start a 1mcg.
Some people don't get the aches. I hope you'll be one of those.