Tymlos side effects

Posted by loh @loh, Jan 29, 2025

Has anyone else had leg/back aches with Tymlos? I've been on it since October and lately I've had terrible aches in my legs and lower back, especially at night. Is that one of the known side effects? Thanks!

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Profile picture for cherraven @cherraven

@gently I have taken a day off in between my 2 injections and feel back to normal on those days.
I asked my Endo if I can take a lower dose and the answer was No! I just feel yucky all day after the injections as dizzy with headache and neckacje all day even when I am drinking tons of water for hydration

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@cherraven I don't believe that is the case. People here have lowered their Tymlos dose and still had good results.

Just as an experiment, try only four or five clicks next time. See how you react.

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Profile picture for dbamos1945 @dbamos1945

@kristie2: Reclast after Evenity I believe was the road you chose. Kristie, will you share what your side effects occurred and results of bone density tests. Do you feel this was the best course to take after Evenity? Thank you for sharing.

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@dbamos1945 I did reclast before envenity (which was brutal on me) I finished but I am still struggling a year later with the effects of the side effects. They say tylemos is a different class than envenity.

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Profile picture for njx58 @njx58

@cherraven I don't believe that is the case. People here have lowered their Tymlos dose and still had good results.

Just as an experiment, try only four or five clicks next time. See how you react.

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@njx58 I totally went off of it. I constantly have a dull headache, dizziness, nauseous and felt like I was in a fog. These drugs are just not good for me. I only did one click - I was told not to lower the dose.

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Profile picture for cherraven @cherraven

@gently I have taken a day off in between my 2 injections and feel back to normal on those days.
I asked my Endo if I can take a lower dose and the answer was No! I just feel yucky all day after the injections as dizzy with headache and neckacje all day even when I am drinking tons of water for hydration

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@cherraven

You may want to consider what I was told when I asked a specialist in a related field about Evenity. I had relayed that I would be more comfortable taking half dose (only 1 of the 2 syringes for each dose) but the NP at the osteoporosis clinic had denied that request. Her response was that I could always refuse the second syringe. I have been known to walk out before getting CT angiograms when I encounter staff who will not listen to my concerns. (These were not critical scans.) Patients do not relinquish all power.

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Profile picture for njhornung @normahorn

@cherraven

You may want to consider what I was told when I asked a specialist in a related field about Evenity. I had relayed that I would be more comfortable taking half dose (only 1 of the 2 syringes for each dose) but the NP at the osteoporosis clinic had denied that request. Her response was that I could always refuse the second syringe. I have been known to walk out before getting CT angiograms when I encounter staff who will not listen to my concerns. (These were not critical scans.) Patients do not relinquish all power.

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@normahorn thank you and I agree as I am going to cut the dose myself although she is testing my blood in 4 weeks as looking at full dose

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Profile picture for robe1018 @robe1018

@dbamos1945 I did reclast before envenity (which was brutal on me) I finished but I am still struggling a year later with the effects of the side effects. They say tylemos is a different class than envenity.

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@robe1018: Are you taking any drug for osteoporosis after the Evenity? If so, pkease share with dosage regimen. Thanks.

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cherraven, very sensible. And I applaud your confession to Norma that you have decided to start at a low dose.
I should add that some are allergic to the preservative in Tymlos and cannot tolerate the medication, but your symptoms sound more like a calcium issue that your body may adjust to. There are the very few who develop hypercalcemia on Tymlos.
If your hip T scores are very low, your doctor may be concerned that you gain bone quickly (as in before you fracture).
I'm pleased your doctor will be testing you in several months. Your parathyroid level should be lower. Hope she tests for steady calcium levels and P1NP which will have risen. Your deceit won't be evidenced, but don't confess. Keep us apprised.

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