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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eeeliseee1 | @eeeliseee1 | Mar 22 4:23pm
In reply to @dianestanley "I would take the advice of your doctor. I had a broken jaw 1981/teeth wired shut..." + (show)
@dianestanley

I would take the advice of your doctor. I had a broken jaw 1981/teeth wired shut for 8 weeks and had TMJ until I got braces for the second time. Some of my bone in my jaw joint eroded away but stopped. After talking with my doctor who thought Evenity would be good along with an oral surgeon, I had decided to take the risk and get the Evenity. I have bones in my back broken and can only stand for 4-5 mins. I am only 69 so I can't have surgery to fix the problem until I get stronger bones. I want to be almost normal again. The oral surgeon gave me the impression that I know what I went through with my jaw many years ago. If the bone dies, they can use cadaver bone. I have already had a band on one side of my jaw that has worked perfectly. I had decided to get the Evenity and looking forward with hopes of everything turning out good.

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How did your course of Evenity go?
I’m trying to pick which drug to start
Thanks!

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1 reply
eeeliseee1 | @eeeliseee1 | Mar 22 4:24pm
In reply to @aladdin1 "Hi, Yesterday I took my third shot of Tymlos. I had severe back pain for 5-10..." + (show)
@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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Hi
How did you tolerate your first year on Tymlos?

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dianestanley | @dianestanley | Mar 22 4:35pm
In reply to @eeeliseee1 "How did your course of Evenity go? I’m trying to pick which drug to start Thanks!" + (show)
@eeeliseee1

How did your course of Evenity go?
I’m trying to pick which drug to start
Thanks!

Jump to this post

I had 12 shots of Evenity ( a shot every 30 days for a year.) The Evenity was great for me so far. I was able to get my back surgery done and the surgeon stated to me after my surgery that my bones looked really good. Last week, I had my 3rd shot of Prolia (twice per year). I am concerned about the Prolia but the only thing so far with that drug is that I have been tired. I can stand and walk much longer now and that should keep improving as time goes on. I do have to do exercises though.

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1 reply
dianestanley | @dianestanley | Mar 22 4:36pm
In reply to @dianestanley "I had 12 shots of Evenity ( a shot every 30 days for a year.) The..." + (show)
@dianestanley

I had 12 shots of Evenity ( a shot every 30 days for a year.) The Evenity was great for me so far. I was able to get my back surgery done and the surgeon stated to me after my surgery that my bones looked really good. Last week, I had my 3rd shot of Prolia (twice per year). I am concerned about the Prolia but the only thing so far with that drug is that I have been tired. I can stand and walk much longer now and that should keep improving as time goes on. I do have to do exercises though.

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Over all, I am pleased with everything. I am getting my life back again.

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cbsue45 | @cbsue45 | Apr 11 2:55pm

I took teriparatide for 6 months when it was replaced with Tymlos. I’ve done 40 days at 80., no break between drugs. On the teriparatide I had cough, tooth pain, a couple episodes of Afib and increasing blood pressure. After the switch to Tymlos my blood pressure continues to climb, still have the cough, ringing in my ears, nervousness, pounding heart after injection and Potassium is high, sodium and chloride are low. I am going to stop for a week just to see if symptoms improve.
Does anyone have thyroid issues? I’m wondering if my thyroid is part of my issue though labs aren’t showing anything.

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bluebonnet242 | @bluebonnet242 | Apr 12 3:56pm

I haven’t started Tymlos yet, waiting on prior authorization but was wondering if anyone had had a cortisone injection while on Tymlos. I fractured my hip in November and have osteoarthritis and/or issue with the screws used to pin it. Ortho wants to do cortisone injection in six weeks. Should I wait to start Tymlos until I get my cortisone injection. Was wondering since so many seem to have joint pain on Tymlos.

Orthopedic surgeon is trying to determine if the screws are bothering me or the osteoarthritis.

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1 reply
bluebonnet242 | @bluebonnet242 | Apr 12 6:08pm

Another question. Does anyone use a Tymlos pen where the needle is already attached? When I talked to the doctor’s office and was asking for the smallest needle she said it was attached and I wouldn’t change it out? I mentioned I had not heard of that.

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4 replies
windyshores | @windyshores | Apr 12 6:32pm
In reply to @bluebonnet242 "Another question. Does anyone use a Tymlos pen where the needle is already attached? When I..." + (show)
@bluebonnet242

Another question. Does anyone use a Tymlos pen where the needle is already attached? When I talked to the doctor’s office and was asking for the smallest needle she said it was attached and I wouldn’t change it out? I mentioned I had not heard of that.

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@bluebonnet242 The needle is not attached!

The company wants a certain size needle and that is what comes with the pen. But my doc okayed smaller needles and did a prescription for them at the drug store.

I did not have any joint pain on Tymlos. I have joint pain on Evenity though.

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bluebonnet242 | @bluebonnet242 | Apr 12 6:44pm

Thanks for clarifying the needle. She made it sound like I wouldn’t be changing the needle. Told her that didn’t sound right so now I have another appointment with the doctor just to ask a few questions. Will probably need a new doc!

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windyshores | @windyshores | Apr 13 7:09am
In reply to @bluebonnet242 "Thanks for clarifying the needle. She made it sound like I wouldn’t be changing the needle...." + (show)
@bluebonnet242

Thanks for clarifying the needle. She made it sound like I wouldn’t be changing the needle. Told her that didn’t sound right so now I have another appointment with the doctor just to ask a few questions. Will probably need a new doc!

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@bluebonnet it will become clear once you get the medicine and needles. Doctors often don't know the practical details. No need to see the doc about how to use the pen etc. A nurse from Radius can help you, and save you an MD appointment. But it is not that useful to figure the pen situation out before seeing it 🙂

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