Struggling with Tymlos medicine

@cathyf31 just take your time with tymlos. I did a dexa with TBS, Did a Dexa with TBS 1 years on Tymlos, then did another Dexa with TBS 6mth later when I stop. (out of pocket cost 90$) but I wanted facts, also wanted benchmark before started fosamax.
Last 6mths growth in femur as predicted per chart on tymlos website. my endo and functional medicine doctor where impressed with my results. I also, added designs for health collagen daily to my am coffee. I stopped all oxalate foods, managed my calcium with foods, and took vitd with k. Definitely keep an eye on your calcium with blood tests. I had to cut back because of tymlos. speak with your dr. about this (Hypercalcemia). I stayed on top of all blood work! Dr.s are overwhelmed, with limited time with patients, so I spent time managing myself and reporting back to endo.

@cathyf31 Honestly, just do what feels comfortable with the dose, and don't worry about what thery're telling you. You havs nothing to lose given that you can't tolerate the full dose.

@vixstermoves Thank you. Yes, my endo is constantly in communication and is on top of both blood & urine labs. My firts, since stsrting Tymlos is Monday. Trusting all will be ok. Sure enjoyed lower leg and ankle swelling being back to normal this AM. Trusting other side effects will follow. I spoke to a Tim Los clinical educator for 70 minutes yesterday. She provided the number and who my provider can speak to to get more insight into the reduced dosing. I'm simply caught in a position, where my provider had never heard of reducing the dose itself. I believe she is open and will follow through quickly, with learning more. I have also shared several of this forms posts with her. Trusting she will extend my trial on a reduced dose at 40 mcg/4 clicks, beyond the original stated one week trial period.

@cathyf31
No doubt the drug, is what I call shifty. Every day I had weird zings of pain that I would breathe through and it would go away. My shins hurt a lot. I would just breathe through the process. This lasted easily for nine months.
Honestly, I don’t think there are any set rules. Besides staying on it for a year and a half. They did a trial, with a set dose- 80. . I don’t think there’s anything wrong with working up. I did a two month gradual build. The other thing I did was I kept Tymlos the refrigerator. Every day. Definitely do what’s best for you. We have each other to learn from.
Doctors are overwhelmed, and limited. Sometimes they don’t reach outside their scope, perhaps because they have no time. Who knows.

@vixstermoves Interesting about keeping your pen in the refrigerator. I did read that is an option, if it becoming heated is the alternative. I would assume by doing so, it may also extend the pen's 30-day shelf life well beyond that???

@njx58 It's importsnt to keep my provider on board and aware of what I woukd like to do. Number one, she's diligent and good and I want to stay with her. Number two, both of us diving deeper into this reduced-dose option, may significantly benefit other patients beyond me. Number three, I would like this to be a longer-term option, where a script for refills would come into play!! We all learn new things at different times for different sources. She will appreciate being provided this info to look into. I am just shocked that there is nothing official for providers to find this info thru their regular means.....YET. Sad.

@cathyf31 I started doing it because I travel in a van. I think the info on the box to keep it cooler than 73* or close, which isn't very warm. Think summer days when you have the windows open! I have saved all my pens ( I literally just finished), because, it was such a pain in the to get the refill from Accredo. They stressed me out, for months. Lot's of errors on their part, and of course, you can't miss a day. Sometimes the pen would come the day before I had to start a new pen. So, I kept the pens, in case they messed up. Yes, theirs plenty medicine left in each pen. I'm think 4-5 days??

@vixstermove I wonder if there's any difference in side effects , or severity of side effects, if the medication is injected cold versus room temperature. I believe some of the instructions say to allow it to warm up to room temperature for at least 30 minutes, before injecting. Once you take the pen out and allow it to go to room temperature, then it only has a stability shelf life of the 30 days. So, you would definitely be tying your hands to toss it. I have not been overly pleased with my specialty pharmacy either, but at least it has not impacted the delivery anywhere close to causing stress by not receiving it, well in advance. At least not yet!

@vixstermoves ....and, it's interesting that you mentioned you do that, because you travel in a van. I had already thought my way through that the first time I have to travel, I would need to be sure to take one of the coolers and ice packs that they send my pan with in order to protect it, while I travel. Or at least have it with me, just in case I get caught someplace without air conditioning and the environment is too hot to protect the pen.

@cathyf31 Those are good thoughts. I haven't experienced the difference. At home, I take the pen out of the fridge before bedtime. By the time I did the injection, at least 30-60mins (I was good at stalling! 🙂 ) had gone by, enough to warm up to room temperature. When, I'm in the van, sometimes it was colder than room temperature. I don't recall feeling different effects. That said, I didn't pay enough attention to that thought. I just looked up the package, it mentions 77°. Summer time can be much warmer than that without AC. So, sticking it the fridge daily worked well.