Tymlos

@njx58
Thank you. Did you start injecting at night and change or have you always done mornings?

@oopsiedaisy Started my first dose of Tymlos last Saturday night & had severe adverse side effects--massive migraine, very high BP & heart rate & severe, some dizziness &excruciating back pain. Thought I would have to go to ER. Spoke to the Radius educator (very helpful) and she said that in rare instances, these adverse side effects can happen (my doctors were not aware!). I lowered my dose from 80 to 40 mg & the side effects were the same, but significantly milder. I think I will work my way up to the full dose by the weekend.

@mrg1 , I started at night but it made me sick as a dog. My first injection of 80 mcg (8 clicks-standard dose) had me in bed, nauseous for 2 days, felt like a short flu. Once I was better, I started back with one click for a few days, then 2, 3, etc. At 6 clicks, I had high heart rates (pulse of 165, 156, 147- IN MY SLEEP), consulted my Dr who took me off it for a few days, re-tested calcium blood levels. Started again a 1 click, slowly increasing to 5 clicks over a few weeks. Dr says to drink a lot of water with it, at least 16-24 oz. Then I was getting up 2x per night just to pee. Dr said it doesn't matter what time you are doing it, as long as it is the same time each day. I have settled on 3pm every day. I've only gotten as high as 5 clicks bc 6 sends the heart rate back up. That said, the struggle is worth it. I was able to go from -3.1 total spine to -2.6 on my own in a year with proper nutrition, correct supplementation and lots of exercise. After 11 months on Tymlos, never the full dose, I went from -2.2 to -1.5. Dr should test you after 12 months on Tymlos to see how your body is responding, then again at 18 months to see if your body is still responding. If you have a diminished response at 18 months, they might suggest that you go off the drug. Keep at the Tymlos until you find out what works for you!