How long does it take for Tymlos side effects to subside?

@omgirl I had no problems finding needles. Thanks for clarifying. I first looked on Amazon, then got doc to prescribe at local pharmacy so they were free.

I was making the point that the specialty pharmacy was limited by studies and forgot to mention that there are other ways to get needles.

@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!

How long have you taken it and how did you decide when to increase? Since I had always done full dose but this happened after 6-7 weeks I’m pretty clueless but glad I checked the forum! Oh, I had plenty of other side effects and some didn’t realize or associate until stopped last week and noticed no leg and feet cramps which had become pretty much daily upon waking & stretching or whenever. Started taking more Mg & helped some, maybe 50% but I also forgot on some days. I’ll prob start again next week or after Labor Day with 2 clicks & that would be a 2 week break. Assume your pen lasted for longer and did you keep using until empty? I wasn’t keeping in refrigerator after opened but now put in since will be holding for longer ..

Thanks for all your help, you’re so helpful to many @windyshores !

Yes I refrigerate it and doc said it would be fine to use over 30 days. I don't think two clicks does anything but it can help you get to 4, then more if possible. I got to 6 for a few months and did 7 clicks for most of my treatment and have done fine on 8 clicks, full dose, for the last few months. When I first did 8 clicks at the beginning of my treatment, before I hit on the idea of ramping up, I landed in the hospital. So the body does adjust. But try to get up to 4 clicks as soon as you can and then 6 and so on.

@windyshores Thanks for the update & think I’ll start with 2 for a few days, then 3 for few days, and then stick with 4 for longer before adding another due to previous horrible side effect (but at least it stopped asap when didn’t take the next day)! Omg.. what caused you to go to hospital, palpitations or something similar? My issues weren’t immediate & terrible insomnia the first within a couple weeks. Since already have insomnia I didn’t catch on right away until couldn’t sleep before 5-5:30am which isn’t at all reasonable. Actually might start again this weekend since first week would be 2 & 3 clicks so shouldn’t have any issues.

My previous bone health MD likes this idea & said read a study from Japan where one full dose per week had decent results. Unfortunately she moved shortly after I started & new guy not so flexible. I’ll try to get link for that study & share

Hi All:
I am 61 years of age, 5'0 and 105 lbs with early onset of osteoporosis in my spine.
The PA was really excited about Tymlos as an option for me since I am still on private insurance.
My subsequent visit with the Dr. who said my bones are decent, wouldn't say if I should take the medication, said I would need to make a decision.
I don't have any other health concerns, some IBS at times, I am a bit concerned about the side effects of the medication and risk of bone cancer with this medication.
Any advice or encouragement is appreciated.
TY
TraceSL

@tracesl there has not been a single case of bone cancer among patients on Tymlos or the similar drug, Forteo. The black box warning on this has been removed. There is some outdated info on this online.

I had breast cancer but had no concerns about going on Tymlos.

If you are nervous, you can start with a half dose or even a quarter dose. There are 8 "clicks" on the injection pen and you can do however number you want. Move up to a therapeutic dose as your body adjusts. As always talk to your doctor. Mine totally approves of this ramping up and is now recommending it for other patients.

I just started Tymlos last week. Side effects getting me. How about you?

Are you taking a full dose?