Struggling with Tymlos medicine

@vixstermoves With the pen warming up so frequently, does that concern you regarding the stability and effectiveness of the medicine beyond the 30-day shelf live?

@cathyf31
All my pens are back in the refrigerator. They were out for eight hours to nine hours, on the nightstand during sleep. If I was in a pinch, I would have no problem using it again over the 30 day.
Who knows where they came up with 30 day. Maybe just from the trial. 🤷🏽‍♀️

@cathyf31 What are your side effects on Tymlos and how long are you on it? Most people on this site have complained of initial side effects and most have found that they abate after a while. I had strong bone pain at night. My arms and legs ached. That lasted about 3 or 4 weeks, and then no noticeable side effects at all. As for going off-label, I've done it and not due to side effects but because of concern about the "standard dose of 80 mcg" being appropriate for everyone, whether you weigh 100 lbs or 200 lbs! I questioned the manufacturer, the specialty pharmacy that fills my medication, and my endocrinologist. I could not get any meaningful info but my doctor seems okay with it, and my P1NP after 4 months was at 98, a good number. I weigh 110 lbs and take 70 mcg or 7 clicks. I'll be getting a new DEXA scan in a month or so but it won't be of much help for me as my spine is very damaged from sports injuries and my hips were replaced in 2017 (marathon runner). My DEXA forearm score was -3.3. I took a REMs test and my lumbar spine was -3.3 back in February. Looking forward to the next REMs test at which point the Tymlos should have begun to build bone - it starts at 6-9 months. If no improvement I'll attribute that to my lower 70 mcg dose.

I believe it’s worth it. I had extreme reactions. Have the doctor start you at two clicks and then slowly work your way up after a couple months all the side effects disappeared. I’m on year two and I’m sticking with it. I hope you will too.. I was told that the side effects will magically disappear after a couple months and they did. I figured that all the misery those of us get with side effects is because OUR bones really need it the most.

@2024tymloshelp after I finish my TYMLOS I go back to the Reclast. I know that the doctors if they don’t see a result with one medicine like the TYMLOS they can switch you to another one. And if they don’t know what to do, I’d suggest getting a different Doctor Who does.

@cathyf31 depends should only last 30 days so I don’t see what the problem would be. You’re supposed to throw it out after it reaches the little plastic line on the pin which corresponds to a little bit after 30 days if you are underdosing to titrate up, then it is no problem to keep the medicine longer than 30 days. Just leave it in a temperate room that’s around 77°.

I think you should listen to your body, it is telling you something. There are other options out there might be better for you. Best of luck to you friend.

@loriesco The manufacturer and pharmacists insist that the stability of the medication degrades after 30 days at room temperature. With my issue of trying to manage side effects and wanting the biggest bone-building bang for my buck, I personally am not willing to gamble with a potentially unstable med/ingredients. Best wishes.

@willowmena I am extremely sensitive to many meds. Tymlos instantly caused dizziness, headache, and shortly thereafter nausea. Those three continued for 3 weeks, but are now beginning to come in waves with no obvious trigger. The severity of each is also beginning to decrease. I also have lower body swelling (and hands), increased bone pain while walking in size, femur, ankles, and feet, crazy strong tingling/crawling on my "bad leg's" shin, night sweats, etc. I am not a person to have headaches, so the headaches, sleep disturbance, and significant fatigue are not okay. I believe last night was my 24th injection. (I also was athletic....5 hip replacements, w/ 4 on my "bad side," which included damage to my central nervous system, as well as to other systems...one of which has a direct link to my osteoporosis....all due to my original botched THR in 2012). I am counting on being able to stay on Tymlos, but dose adjustments will ultimately need to be approved by my provider longer-term. I'll be monitored via DEXA & TBS at 6 months or a year (unsure yet). If I fail this treatment (#3), then I'll have to be put on Reclast. Not ready to raise that white flag uet. Good luck to you!! I trust you will be pleased with your gains!!

@cathyf31 I only saw "may" and if one keeps leftovers in the fridge - I would trust it would be okay for a little longer - if needed. I agree that if you want the biggest bang for your buck, you go with your gut. Some people who pay for the medicine - and can't afford it can probably squeak by keeping it in the fridge. I always refer to the doctor's advice and keep my medicine at a cool temperature.