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?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

windyshores | @windyshores | Dec 24, 2024

In reply to @melodyrobidoux "I just cut back my calcium to 500mg x2 a day. I don’t drink or eat..." + (show)

I am allergic to dairy and take 800mg/day of calcium supplements, split in two. My calcium remains around 10. I was told that the body basically excretes excess calcium but also there is risk of it ending up in blood vessels. I don't know much about this and maybe someone else will chime in.

Tymlos tends to raise calcium at least temporarily, after injection. It eats up Vitamin D3, I read, and I myself experienced a need for 3000 units/day while on Tymlos. Usually I do 1000-2000 units depending on the season.

If you are taking 1,000 mg calcium plus the yogurt that should be okay according to the table posted and what my doctor has said.

bluebonnet242 | @bluebonnet242 | Dec 24, 2024

In reply to @melodyrobidoux "I just cut back my calcium to 500mg x2 a day. I don’t drink or eat..." + (show)

I was typing as @windyshores was typing. I deleted my comment as Windy’s reply was more eloquently said 🙂

melodyrobidoux | @melodyrobidoux | Dec 24, 2024

In reply to @bluebonnet242 "I was typing as @windyshores was typing. I deleted my comment as Windy’s reply was more..." + (show)

@bluebonnet242
I had cut back my calcium before you posted the recommended levels. 😊 We were on the same wavelength.

melodyrobidoux | @melodyrobidoux | Dec 24, 2024

In reply to @windyshores "I am allergic to dairy and take 800mg/day of calcium supplements, split in two. My calcium..." + (show)

My calcium level also runs about 9-10. I take 2000 IU D3 and will investigate increasing that amount.

My brain fog and confusion aren’t right after the injection. It’s daily since I started Tymlos.

Happy Holidays to all on this thread and thank you for your help. ♥️🎄

windyshores | @windyshores | Dec 24, 2024

In reply to @melodyrobidoux "My calcium level also runs about 9-10. I take 2000 IU D3 and will investigate increasing..." + (show)

@melodyrobidoux I thought you were decreasing from the high dose of 2000mg. Happy Holidays to you!

zygote | @zygote | Dec 28, 2024

In reply to @melodyrobidoux "Thank you for that information. I have also noticed flushing on my upper arms. Glad to..." + (show)

I'm still taking 70 mcg. 6 months on Tymlos.

melodyrobidoux | @melodyrobidoux | Dec 28, 2024

In reply to @zygote "I'm still taking 70 mcg. 6 months on Tymlos." + (show)

That’s great that you could get to 70mg and stay there.

Endo is having me take a two week drug holiday and then try again.

prayingmom1 | @prayingmom1 | Feb 25 1:23pm

In reply to @melodyrobidoux "The bone started growing out of the gum line when I had taken Fosamax for almost..." + (show)

How do you dial down the dose? I had a severe reaction to my first injection, and when I called the company, my representative said that I should ask the doctor to do a graduated dose to get my body used to the medication. My doctor said she would not do that, and I needed to just use the dose that Was prescribed. I have tried Fosamax, Actonel and Prolia with severe side effects. Prolia caused such severe bone pain I was unable to walk for three months. My bones are so bad. I fractured two vertebrae. Just stretching in bed. Multiple rib fractures toe fracture a wrist fracture and I just have to get my bones repaired so I’m trying really hard to continue to use Tymlos because the doctor said that I would not have the severe bone pain that Paul caused because Prolia such a strong injection so that it last for six months.

gently | @gently | Feb 25 2:43pm

I'm not the expert so I hope everyone chimes in. When you dial to stop you are at eight clicks. If you listen while dialing you can choose from 1 to 8 clicks. Some like to skip a day, if they have been having side effects. I hope this works for you. Tymlos one of my favorite medications for osteoporosis.

melodyrobidoux | @melodyrobidoux | Feb 25 4:21pm

In reply to @prayingmom1 "How do you dial down the dose? I had a severe reaction to my first injection,..." + (show)

As in the other response, listen for the clicks as you dial up to 80mcg. Stop at 4 clicks for 40mcg. My doctor let me drop to that dose when I had severe side effects. Unfortunately, I still had side effects and stopped. I really wanted it to work for me. Now waiting to hear next option.

Have you had Reclast infusions yet? I started with those annually for 3 years before starting Tymlos.
Best wishes. Mel