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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@lnl

For anyone else out there like me: I'm approaching 4 months on Tymlos and still only at 4 clicks. It's all I can do, and I just have to hope it will be enough.

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I was on Tymlos at only 4 clicks for about 4 months (after being at 3 for a month)… then was was able to go up 1 click every couple weeks without any worsening of symptoms and am at 8 now. I still get what I call a “bad head rush” for about 15 minutes, along with tachycardia, but that is all. At my specialist’s encouragement, I didn’t rush it. She was happy at any level I was on, as keeping with it was better than quitting and she was optimistic that even a lower dose would be beneficial. So do what you can and kudos for persevering.

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@marciagb

I was on Tymlos at only 4 clicks for about 4 months (after being at 3 for a month)… then was was able to go up 1 click every couple weeks without any worsening of symptoms and am at 8 now. I still get what I call a “bad head rush” for about 15 minutes, along with tachycardia, but that is all. At my specialist’s encouragement, I didn’t rush it. She was happy at any level I was on, as keeping with it was better than quitting and she was optimistic that even a lower dose would be beneficial. So do what you can and kudos for persevering.

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Thank you for your kind and encouraging words. It has been a hard adjustment for me--the tachycardia was my big issue. There were a lot of calls to the Tymlos nurse at the beginning. And, yes, my endocrinologist is the same: happy at any level ( I get a "that's great!" when I report my slow progress), and optimistic that something is better than nothing. I do try 5 clicks at least once a week in the hope that I'll be able to maintain that eventually, but so far it hasn't happened. If you've been following this thread, you may have seen that I also mentioned my hair started falling out (it's clinically called, ahem, "hair thinning," not "hair loss,"), and that was another issue for me in not wanting to try to ramp up any more. It seems to have slowed down, but it's still distressing. Re: the tachycardia: I've managed it by elevating my legs after the shot. The Tymlos nurse suggested I try it, and it absolutely helps. Perhaps it might help lessen your post-shot symptoms, too. I hope so.

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@candy209

That’s fantastic. I hope I am the same once I start.
Did you do anything special like extra hydration?
All the best to you.

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I did up my hydration a bit but overall I try to stay hydrated in general.

I also am pretty good about diet and exercise. I have been meditating and visualizing my bones getting stronger.

Best of luck. I am holding a vision of you being entirely successful. 💖

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Thank you so much. You made my day 💖 You think and live how I do. That gives me such hope. I have been meditating about my bones as well. Healthy diet, exercise as well.
Thank you for your kind words and best wishes to you for success with your bone healing journey.

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@windyshores

I understand the fear. Try to get up to at least 6 clicks. Also, if you have a headache, dizziness, nausea, whatever don't panic and keep going if you can, because they tend to go away according to those I know personally and that was my experience as well. I changed to morning and stay active and feel better than I used to when I stayed in bed after the shot! Everyone is different. Try to find what works for you. I am so grateful for this med.

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Did you take pain medicine for side effects?
River Park

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@riverpark

Did you take pain medicine for side effects?
River Park

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@riverpark Occasional tylenol.

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Hello, I started 2 weeks ago, and the pain in my legs , knees and feet are already unbearable! It actually feels at times that my bones are literally snapping in half.
I was hoping these symptoms would subside over time, but after reading a lot of others peoples experience, I’m beginning to think this is a long haul situation. I wish you the best

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@aladdin1

Hi,
Yesterday I took my third shot of Tymlos. I had severe back pain for 5-10 mins. Has anyone else had this issue? Should I stop taking it?
I am 56 years old and have a good tolerance for pain, but last night was unbearable.
Thanks for any thoughts.

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I have had back pain occasionally. I find that drinking water is the best remedy. Lots and lots of water.

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Does anyone have a remedy for fatigue on Tymlos? That has become my most annoying side effect of late.

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@mspatart

Does anyone have a remedy for fatigue on Tymlos? That has become my most annoying side effect of late.

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Good evening @mspatart. I sure am sorry about your fatigue related to Tymlos. In my experience with 2 years on Tymlos, I do not recall an increase in fatigue. However, fatigue appears to accompany pain, at least for me. It just wears me out. Even today........after an hour of MFR (myofascial relief therapy) and an hour shopping at Costco.....I came home and jumped into bed for a two-hour nap.

However, I do have SFN (small fiber neuropathy) and the pain from that can wear me out rather quickly. Then there is the barometric pressure. Anything below 30.00 can increase pain and expose me to additional fatigue.

I wish there really was an energy treatment. Throw in some natural aging issues and I will be nodding off over in the corner.

May you be safe, protected, and free from inner and outer harm.
Chris

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