Tymlos side effects I've encountered

Posted by anniesan @anniesan, Oct 2, 2022

Hi. I started Tymlos in February 2022 and about a month after starting it I began experiencing excruciating muscle spasms, esp in upper thighs and feet, neuropathy, as well as debilitating hip, leg, and back pain. My doctor wanted me to try and stay on it for at least a year, but I absolutely could not go on living with the pain I experienced. I stopped taking the Tymlos completely 6 days ago and all my symptoms have subsided. Has anyone else experienced these side effects while on Tymlos?

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Hi all,
I have only been able to take up to 6 clicks on Tymlos after 6 months. I still get extremely nauseous after taking it, although the low blood pressure and palpations have gotten better. Unfortunately the nausea affects my appetite. I too have scoliosis. I have found physical therapy, with a pt skilled in both osteoporosis and scoliosis, to be very helpful. Best of health...

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Yes, but after 10 months of taking it. I'm about to quit it to see what happens.

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@mdg224

Hi all,
I have only been able to take up to 6 clicks on Tymlos after 6 months. I still get extremely nauseous after taking it, although the low blood pressure and palpations have gotten better. Unfortunately the nausea affects my appetite. I too have scoliosis. I have found physical therapy, with a pt skilled in both osteoporosis and scoliosis, to be very helpful. Best of health...

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mdg, you might try staying at the level that leaves you without nausea.

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Hi All,
New person to this group. Very helpful to read of your experiences. Thank you.
I'm starting Tymlos today and am very frightened -frankly. Am going to start with one click and work my way up. My doctor is very much against titrating but I know if I have a bad initial response that I will stop before I begin.
Has anyone started so minimally?

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@cm22

Hi All,
New person to this group. Very helpful to read of your experiences. Thank you.
I'm starting Tymlos today and am very frightened -frankly. Am going to start with one click and work my way up. My doctor is very much against titrating but I know if I have a bad initial response that I will stop before I begin.
Has anyone started so minimally?

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No and I have had many issues with all types of meds. I only had one problem with tymlos which resolved early on. I have taken it for 15 months now. I am recovering from T-12 through S-1 inclusive fractures all at one time. I was skeptical too, but diagnosis was serious and really had no choice. I never titrated med.

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@cm22

Hi All,
New person to this group. Very helpful to read of your experiences. Thank you.
I'm starting Tymlos today and am very frightened -frankly. Am going to start with one click and work my way up. My doctor is very much against titrating but I know if I have a bad initial response that I will stop before I begin.
Has anyone started so minimally?

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cm, welcome to Connect.
The lowest I've heard of is two click, but I think you are wise. You might go up to two tomorrow. Just go slow enough that you know exactly what your reaction will be.
Tymlos is a terrific medication, but not for everyone, almost everyone, though. I hope you have luck. Let us know. Are you doing bone markers?

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@maria77

Yes, but after 10 months of taking it. I'm about to quit it to see what happens.

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You may want to discuss with your doctor. Stopping Tymlos without a follow-up plan will cause a reversal of gains. That's proven. You wouldn't want that to happen.

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@njx58

You may want to discuss with your doctor. Stopping Tymlos without a follow-up plan will cause a reversal of gains. That's proven. You wouldn't want that to happen.

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I know with my situation I was told I will need to go on another med after my 2 years of tymlos. Ive been told that I'll need to protect the gains I'll make while on tymlos. That decision will be made about what drug I'll go on come the end of 2025.

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@cm22

Hi All,
New person to this group. Very helpful to read of your experiences. Thank you.
I'm starting Tymlos today and am very frightened -frankly. Am going to start with one click and work my way up. My doctor is very much against titrating but I know if I have a bad initial response that I will stop before I begin.
Has anyone started so minimally?

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Hi and I am new also to this but have had great help from others on this site. I tried first dose at 8 clicks and just couldn’t handle the side effects of headache,lightheadedness and insomnia. So went 4 clicks next night and no headache but still other side effects. After reading suggestions on here, I decided to not take any until effects wore off which was almost four days and switched to two clicks and doing it in mornings. So far, I’m good and going to three clicks today after four days of two. I’m taking it slow for I’m also on other medicine getting over my fractures and Kyphoplasty and I’m just not tolerant to meds. My doctor wasn’t aware of the clicks but I am doing what I feel is best for me in being able to stay on this for many have had such great results.

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@njx58

You may want to discuss with your doctor. Stopping Tymlos without a follow-up plan will cause a reversal of gains. That's proven. You wouldn't want that to happen.

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Thank you.

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