@windyshores That’s nice that you can get free needles, I assume not covered by our insurance or if they were too pricy at the specialty pharmacy (think $35 for 100 but they were the kind that had attached needle disposal so don’t need sharps container). Didn’t ask for and they don’t work with Tymlos storage pouch either so purchased on Amazon. I also got a shorter needle that my sister who was on Tymlos recommended because we’re both petite with little stomach fat and think I do prefer (5mm vs. 7mm that was originally ordered by office).
I actually logged on last night because I stopped Tymlos a week ago due to side effect of constant urgency & uncontrollable urination that I think was slowly building up but wasn’t bothersome until it got the that level for a couple days. Wasn’t a UTI plus no other symptoms so I didn’t take Tymlos the next day and it totally went away like never happened, same day back to normal so zero confusion what caused. I literally wouldn’t have been able to leave house for fear of an accident which absolutely would have happened so couldn’t continue at that point, plus unhealthy and would have become dehydrated.
Got a calcium level drawn because elevated Ca can have the same diuretic effect & Tymlos can cause elevated Ca. It was normal but drawn 3 days after stopped and not sure would have stayed elevated for that long after discontinuing. Had a video visit with my bone health MD on Friday and he ordered additional tests plus agreed should discontinue (in my area, St Louis, the bone health docs are mainly GYNs but have noticed most here use an endo). I brought up the idea of taking a lower dose and his reply was that it hasn’t been tested so wouldn’t do it. I then mentioned this to my sister who previously used Tymlos and she said had read about people starting with lower doses which I of course found on this helpful forum! My doctor suggested Evenity and said would try to get approved but would have to go through same process as for Tymlos because I’m not yet full blown osteo per DEXA, but I am if use FRAX score. I thought about over weekend & discussed with my husband who’s an MD in different specialty, told him my thought about trying a lower dose rather than switching to a new med as that’s my last option since allergic to bisphosphonates and developed jawbone necrosis last year, likely from many years of Prolia as in when it was first released. Evenity also has risk of necrosis but he said much less than Prolia.
So.. after reading multiple posts here about taking lower doses until hit threshold that’s my ‘self plan’ when start back in about another week as want to give my body & mental state a rest before pursing again differently. I told the bone health nurses that I wanted to think more about the Evenity and do some research, wasn’t ready to jump right in with a new med and they totally understood so I’m keeping this under wraps, at least for awhile to see how I fare. Agree with comments that don’t think one dose for all is particularly necessary and a larger person might be able to tolerate higher doses than very petite one (they should do studies on this)!
My question to the hive is what dose would you recommend starting at, or how many clicks, and how long would you wait before going up another click as assume you go up one at a time but maybe not? Thanks and I’ll report back after trying this for awhile..;)
I recently read that even a half dose of Tymlos (4 clicks) has a good effect and my doc said the same thing.
I started at 2 clicks and moved up fairly quickly to 4 clicks. After that it was slower. Keep in mind that the goal isn't necessarily no side effects, but tolerable ones.
I have been on full dose for my last few months with no side effects! The body does adjust. And Tymlos has given me excellent gains. Good luck!