1. < Osteoporosis & Bone Health

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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gently | @gently | Mar 30 3:32pm
In reply to @gently "In reply to @stress101 "@gently I actually did start to use the pen at .60 (six..." + (show)
@gently

In reply to @stress101 "@gently I actually did start to use the pen at .60 (six clicks) and I have..." + (show)
from the archives of windyshores | @windyshores | Oct 3, 2022
I started Tymlos at half and then full dose and ended up in the ER. Had afib, but also was dizzy, headachy, pain all over, nausea- lots of side effects.
I stopped, then met with docs, then restarted at two clicks out of 8 (my idea). I slowly went up over two months, to 7 clicks, where I have stayed for a year. This really minimized side effects. Many days I have none at all.
I have found that hormonal drugs like this (and my cancer med too) have more side effects at first and they change and even lessen. But my full dose attempt created a cardiac side effect that was serious.
With fractures and a committed desire to avoid further pain and disability, I was determined to get back on and have not suffered any significant side effects with this ramp up plan.
That said, Forteo was intolerable for me and does not have an adjustable dose. I have not tried Evenity but that might be an option for you.
Or....you could try two clicks of Tymlos and see what happens, then go to 3, then 4.....and so on!

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@stess101,
Windyshores ( so unfortunately for us) has left Connect. I hope she is lurking somewhere ready to return.

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stress101 | @stress101 | Mar 31 9:03am

I went down to four clicks last night after eight night before. I didn’t have the bad headache this morning only slight. But i still have lightheadedness this morning and my sleep feels disturbed too. Should i dial down more or will these symptoms begin to fade?
Thanks for yout help.

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2 replies
njx58 | @njx58 | Mar 31 9:13am
In reply to @stress101 "I went down to four clicks last night after eight night before. I didn’t have the..." + (show)
@stress101

I went down to four clicks last night after eight night before. I didn’t have the bad headache this morning only slight. But i still have lightheadedness this morning and my sleep feels disturbed too. Should i dial down more or will these symptoms begin to fade?
Thanks for yout help.

Jump to this post

Some lightheadedness is normal. Some people do better taking it in the morning after eating breakfast and drinking some fluids. That may also be better for your sleep. I wouldn't dial back any further.

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1 reply
stress101 | @stress101 | Mar 31 10:22am
In reply to @njx58 "Some lightheadedness is normal. Some people do better taking it in the morning after eating breakfast..." + (show)
@njx58

Some lightheadedness is normal. Some people do better taking it in the morning after eating breakfast and drinking some fluids. That may also be better for your sleep. I wouldn't dial back any further.

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Thank you. I will try that and post if it helps.

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Brittlebones70 | @peggybrabec | Mar 31 10:41am
In reply to @stress101 "How long did you stay on different levels or clicks before going to the next? Your..." + (show)
@stress101

How long did you stay on different levels or clicks before going to the next? Your info is so helpful to us who have problems of drug side effects and makes total sense to have option to begin with lower dose. When I asked my endocrinologist about it, she replied there was only one size of dose. Why are they not onboard with this?
Again, thank you

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I started at 8 clicks. 2 days of horrible side effects!!! Headaches. Tiredness. Muscle weakness. Generally feeling like crap
I spoke to my arthritis specialist. He cut me back to 2 clicks for a week. Then 4 clicks for a week and so on til I finally got to 8 clicks after a month. The only side effect I feel now is just being tired. I can tolerate that pretty much.
Good luck to you

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1 reply
gently | @gently | Mar 31 11:26am
In reply to @stress101 "I went down to four clicks last night after eight night before. I didn’t have the..." + (show)
@stress101

I went down to four clicks last night after eight night before. I didn’t have the bad headache this morning only slight. But i still have lightheadedness this morning and my sleep feels disturbed too. Should i dial down more or will these symptoms begin to fade?
Thanks for yout help.

Jump to this post

stress101, I'd try 3 clicks in the morning with salt and fluids and stay at three until the symptoms fade.

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2 replies
stress101 | @stress101 | Mar 31 2:21pm
In reply to @peggybrabec "I started at 8 clicks. 2 days of horrible side effects!!! Headaches. Tiredness. Muscle weakness. Generally..." + (show)
@peggybrabec

I started at 8 clicks. 2 days of horrible side effects!!! Headaches. Tiredness. Muscle weakness. Generally feeling like crap
I spoke to my arthritis specialist. He cut me back to 2 clicks for a week. Then 4 clicks for a week and so on til I finally got to 8 clicks after a month. The only side effect I feel now is just being tired. I can tolerate that pretty much.
Good luck to you

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Thank you so much.

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stress101 | @stress101 | Mar 31 2:22pm
In reply to @gently "stress101, I'd try 3 clicks in the morning with salt and fluids and stay at three..." + (show)
@gently

stress101, I'd try 3 clicks in the morning with salt and fluids and stay at three until the symptoms fade.

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Thank you for taking the time in helping. I hope this will help.

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gently | @gently | Mar 31 3:11pm

stress101, so windyshores started at 2 clicks and was never able to go above 7 and that took a long while of adjusting.
You do sound hypercalcemic.

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1 reply
stress101 | @stress101 | Mar 31 4:20pm
In reply to @gently "stress101, so windyshores started at 2 clicks and was never able to go above 7 and..." + (show)
@gently

stress101, so windyshores started at 2 clicks and was never able to go above 7 and that took a long while of adjusting.
You do sound hypercalcemic.

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When I asked my endocrinologist about lower dosage she only replied there is only one dose, so feel she does not know about the clicks. She did have all bloodwork done before suggesting Tymlos.
Thank you again for the help. I have read windyshores posts and they are so helpful.

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