User Reviews for Tymlos
Tymlos has an average rating of 4.2 out of 10 from a total of 81 ratings on Drugs.com. 18% of reviewers reported a positive experience, while 47% reported a negative experience.
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Reviews for Tymlos
For Osteoporosis "I just took my first injections and had intense lower back pain like a spasm; it took my breath. My dr said was not associated with med. The next night wasn’t so intense and lasted shorter period. Slight headache also. The list of side effects doesn’t mention intense back pain. My dr strongly suggested I continue to see if side effects go away or become tolerable. Any one else experience this?"
For Osteoporosis "I had steadily, rapidly, worsening osteoporosis. Could not tolerate bisphosphonates and they did not give me any improvement. Did the full 18 months on Tymlos. I had occasional headaches and low BP but no big deal. The BMD I just had after therapy was done was great-overall 11% improvement. My lumbar especially-went from -3.0 to -2.1. The injections were a drag but it was definitely worth it."
For Osteoporosis "I did my first Tymlos injection in the evening before bedtime. Within minutes I had unbearable excruciating lower back pain. So extreme that I sat down in a chair screaming in pain. My partner had to call 911. I was taken to the hospital where I was monitored for several hours until the pain went away. I normally have low blood pressure. Upon arrival in the ER it was extremely high. Dangerously so from the pain the drug caused me to have. I would never do that again. My prescribing doctor insisted that I must have injured my lower back simultaneously. I certainly did not. It was the Tymlos that caused the problem. The attending ER doctor advised me to never try that drug again as I had a severe allergic reaction to it. Would mention here that I have no other known allergies."
Frequently asked questions
For Osteoporosis "I used Tymlos for 3 months initially. Prior to my first injection, my blood pressure was perfect. After the injection, my BP would climb to 185-195/90-95 and the heart palpitations would start. At night, insomnia and leg cramps would arrive. My doctor took me off for one month - no heart palpitations, no insomnia, no leg cramps and blood pressure back to 115/65. My doctor asked me to start again. This time it was worse. BP even higher and heart palpitations more pronounced - extreme chest pains, as well. The leg cramps were brutal and my achilles tendon in my left leg started hurting and burning. Eight years ago I ruptured it in TRX as a result of being on Levaquin. For seven years I have had no pain, no issues whatsoever in exercising until I restarted the Tymlos. I just went in for an MRI, the Achilles repair is intact - however, I now have damage just above - the tendon has thinned and I am on severe restrictions to avoid another rupture. I am off of Tymlos."
For Osteoporosis "I've been on Tymlos for 15 months now. Broke 3 bones in a year after being on Actonel for over 10 years for Osteoperosis. Recent bone density shows 18% improvement in my hip but lately been having lots of back pain. Doc said it's arthritis but it's been much worse in the last few months and I'm wondering if it's from Tymlos. Doc wants me to continue for another year but I'm concerned. Initially had nausea when I started and I can feel my bones being sore too. Anyone else experience symptoms this far into treatment?"
For Osteoporosis "I injected this drug Tymlos daily for 18 months. I had a bone density scan done within two weeks of starting and 6 weeks after end of treatment. My later scan showed only a very slight improvement in my lower spine and my scores were worse in my hip . I’m so disappointed that I did not have significant improvement in my osteoporosis especially since the treatment was so uncomfortable and so expensive. I just hope that I don’t develop cancer or kidney problems from using this drug."
For Osteoporosis "I have had 5 compression fractures. And 1 broken rib since as 51 I'm now 55. My osteoporosis is from prednisone! I was tall at 5.9 now I am 5.4 and my organs are being crushed. I have a hunch back from repeated compression fractures. My neck is like 4 inches forward. I've lost most of my mobility. Can barely get out of chair or bed. I can't garden anymore or do chores. No choice but to take big pharma poisons again. Taking Tymlos for 5 days now. Was no side effects until night 4. So I am taking it at night. I actually inject into fatty part of my thigh. So day 4. Could not sleep a wink. Heart racing, neuropathy whole body, stomach pains, gas, heartburn, dizzy, leg pain. Oh joy now this for 18 months. It better grow bone. I've read if you get a compression fracture get a kyphoplasty! To stabilize the fracture regain vertebral height and get out of pain and no hunch back! The medical field and big pharma aren't here to help. Just now live in a nightmare that I can not awake from."
For Osteoporosis "Christmas Eve 2019 bent over and picked up a box. Fractured L4 and collapsed spine. Did a bone density test in January to find a -3.8! Definitely severe osteoporosis. Started tymlos in February. Been on it for almost a year. Did another bone density test to see if working. So grateful and thankful it’s now at -2.7. I’m still on it for another year and I know it’ll get even better! It works. Of course had side effects, headache and raced heart but used to it. Sometime still effects but not always. Only downside but it has worked!"
For Osteoporosis "I used Tymlos for approximately four months after the first month-and-a-half two months I started having leg and back pain really bad. The nurse practitioner talked me into keep taking it so I took it another month and a half. Then I was hurting so bad I had to go to the emergency room. I started growing bone in my legs, so it was like growing pains. This is what they told me but it hurts so bad that I quit I couldn't take it any longer that was the only side effect I had but I couldn't couldn't stand it as up every night"
For Osteoporosis "My first week on Tymlos was excruciating! About five minutes after taking the injection I had heart palpitations, a severe headache, my teeth hurt so bad and then the lower back spasms started and I cried out in pain. It was horrible. I called my prescribing doctor after the first couple of days and she said that she had never heard of anyone having the side effects I described. They made me feel like I was crazy for saying that it was so horrible. I have now suffered through a little over a month of this drug. Although not so intense I still have heart palpitations and now severe thigh and feet cramps. I feel terrible and don't know how much more of this I can take. I am 59 years old and I work full time and am a very busy person and this has made my quality of life very bad. I hope it is worth it!"
For Osteoporosis "After the 1st injection I had back and leg pain, headache, and heart pounding. The headache lasted about 20 hours along with an ill feeling. The next 2 injections the back and leg pain were much less, but still the headache and slightly ill feeling. Now 8 days in, just slight pain and occasional heart pounding, but only for a short period of time."
For Osteoporosis "I am 72 in an osteopenia stage and had multiple fractures. Forteo gave me too many side effects. Therefore, I have been taking Tymlos for 10 months. Compared to Forteo, Tymlos has been tolerable. The only negatives have been my high calcium score and joint stiffness. Because of the high calcium, my dosage has been reduced to 40 mcg every other day. Has anyone experienced this crippling stiffness?"
For Osteoporosis "I am 77 and my bone results just get worse each time.First injection of Tymlos on 7-23-20. Two hours later, a low grade fever. Next night, the same thing. Third night, didn't inject and no fever. I cannot take this drug and told my doctor that."
For Osteoporosis "I wanted to update my experience. Now after having been on Tymlos for 2 weeks, I am happy to report the side effects disappeared after the first week. I also injected on alternate days for the 1st week which helped a lot. Injecting before bed was a big mistake for an insomniac like me. Just made me focus on my elevated pulse. I find injecting just before I exercise to works great."
For Osteoporosis "I had Tymlos and got side effects of an instant headache, racing of heart and spinning. Headache is a pressure headache and it lasts for hours. This is day in and day out. I have been on Tymlos for 4 weeks and it’s just the same thing every night. I can’t sleep. I tried it this morning to see if it makes a difference and it ruined my day. I am having surgery on my back in 3 months so it’s essential... but I don’t know if I can take it much longer. It’s wrecking my quality of life."
For Osteoporosis "I have been on Tymlos for a month and a half. The only side effect I’ve noticed is that after some injections my heart races for a bit. Not every time. Sometimes upper stomach pain but rarely. I really hope it makes my bones stronger. I’m willing to stay with this the eighteen months if it builds my bones."
For Osteoporosis "Did not do well on tymlos. High 24 hr. urine ca. scores - hypercalcinuria. Started tymlos June 2019; stopped April 11 2020. Other issues: cramps in legs, mental fog starting second month, joint pain in hands, tiredness on a daily basis. Got new rheumatologist; second opinion. Started prolia today. Should have monitored bone markers more carefully both before and during treatment of tymlos. Now I know. New doc. will do blood tests and urine every 3 months. tymlos not for me."
For Osteoporosis "I started Tymlos 3/12/20 and decided to discontinue it due to heart palpitations and anxiety. I also had terrible insomnia with it. I took the injection at night before bed but when I tried taking the injection in the morning I would have to lie down because it made me so tired (go figure). With all of the Covid 19 worries I sure don't need my heart racing anymore than it already is. Also the black box warning of Osteosarcoma worries me a lot frankly."
For Osteoporosis "I found out I had a t score of 3.5 at age 55. They told me I have osteoporosis in my spine. I’ve been using Tymlos for almost two months. The first time I used it I had what other mentioned pain in the back. It was very intense. I tried it the following day and it didn’t cause the same pain. Each day following was fine. I have minor back pain after each injection but use a heating pad to relax it. It is bearable. I’ve heard such good results so I’m looking forward to having a bone density scan after 18 months that I’m suppose to be on it."
For Osteoporosis "I was apprehensive about taking this Tymlos injection because I’m always sensitive to medications. I took the shot Thursday night at 915 immediately had lightheadedness and fatigue heart palpitations. The heart palpitations went away lightheadedness and fatigue stayed. I went to bed at 11pm , was awakened by horrible reflux at 3am. Fell back to sleep was awakened at 5am severe pain in my entire head, teeth, gums, etc. sat up to get Tylenol and was totally blind in my left eye. I woke my husband he took me to emergency room. Spent 7 hours being tested , 2 CT Scans, expert eye examinations, neurological testing, blood tests all normal tests. I try never to take pain medication because it makes me nauseous but they said it would be baby does. Ok . Well wound up dry heaving for 3 hrs. Finally released went home. Once pain meds wore off, pain in head started again. I took 2 gabapentin s, 2 Xanax and slept all night. I woke up Saturday morning same pain in head, the pain jumps all around ."
For Osteoporosis "So I have been on Tymlos and I agree to others commenting on the severe back pain! But why? I haven’t found an answer. Also extreme dizziness. Like nothing I have experienced. All the time not just after the shot. I’m been taking it for 5 months. Not sure I can do it for the 2 years the dr wants me to."
For Osteoporosis "Hi..reviewed this drug 3 weeks ago. I've been on tymlos only 1 month. I had spinal fracture in the past also multiple other fractures from falling from standing position. Anyway I have back pain from fractures but the back pain on tymlos was so severe I have stopped it. I had headache after injection just take tylenol. Fatigue another problem and nausea. I took zofran. i will ask dr to try prolia. Oh I am 69 diagnosed at 50 with osteoporosis but was always afraid of side effects..good luck.."
For Osteoporosis "Tymlos is the worst drug ever. Took it for a little over 2 months. Extreme nausea almost immediately every day. Migraine every day. Daily between 3 and 4PM every joint ached so bad I had to lay down. Constantly felt like I had the flu. Or like I was on chemo. I have been off of it for over 2 months yet still have symptoms which I didn't have before taking it. I am afraid permanent damage has been done. Going to try a tablet next. This medication should be taken off the market. Oh wait, big pharma doesn't care about you its all about that dollar."
For Osteoporosis "I experienced severe headaches 3-4 hours after each injection which actually woke me up every night. I also experienced upper abdominal pain. AND, after taking Tymlos for 1 month, my hair started falling out. I'm still trying to convince my doctor that I experienced all of these side effects. Especially since he wants me to switch to Forteo which has even MORE side effects."
For Osteoporosis "I take my Tymols shot every morning and about 10 minutes after I always get a slight headache lasts about an hour. but, has anyone else had severe leg and feet cramps. They are so bad I am out of bed 4 or 5 times a night."
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