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Struggling with Tymlos medicine

Osteoporosis & Bone Health | Last Active: Apr 13 12:19pm | Replies (140)

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@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.

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Replies to "@cathyf31 What are your side effects on Tymlos and how long are you on it? Most..."

@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!!