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

High calcium levels disrupt muscle function, causing muscle cramping. High calcium interferes with muscle nerve that control muscle contractions.
Hypercalcemia is a known side effect of Tymlos.

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The reason I ask is that I have had sharp shock line pain in one leg, back of thigh. I thought it wasn’t the Tymlos because I also had for a week, awhile before starting Tymlos.. However, looking back, I also had hypercalcemia before starting Tymlos, which went away when I stopped fortified almond milk. (Supplemental calcium).
10 years ago I had a few months of this nerve like pain in the same spot.
My PT thinks it is nerve entrapment.
So can anyone tell me if the pain related to muscle spasms from Tymlos would manifest on both sides, and not just one leg?

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@daisylou

Is the pain in both sides?

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daisylou, no the pain from severe cramping was only on the inner thigh right leg.

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@gently

High calcium levels disrupt muscle function, causing muscle cramping. High calcium interferes with muscle nerve that control muscle contractions.
Hypercalcemia is a known side effect of Tymlos.

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Hi gently, Thank you for indicating high calcium could be the cause. I kept thinking I should start calcium supplements but my Calcium levels have been good on tymlos. I have had hypocalcium for years with cramping due to that, but what I experienced with the severe cramping was no where near what I had with hypocalcium. I bet you are correct.
This from the internet :Besides cramping, hypercalcemia can cause a range of symptoms, including:
Gastrointestinal Issues: Nausea, vomiting, constipation, and loss of appetite.
Fatigue and Weakness: Chronic fatigue, lethargy, and muscle weakness.
Cognitive Impairment: Confusion, difficulty concentrating, and forgetfulness.
Kidney Problems: Kidney stones and increased thirst and urination.
Bone Pain: Bone pain and potentially bone weakening

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@daisylou

The reason I ask is that I have had sharp shock line pain in one leg, back of thigh. I thought it wasn’t the Tymlos because I also had for a week, awhile before starting Tymlos.. However, looking back, I also had hypercalcemia before starting Tymlos, which went away when I stopped fortified almond milk. (Supplemental calcium).
10 years ago I had a few months of this nerve like pain in the same spot.
My PT thinks it is nerve entrapment.
So can anyone tell me if the pain related to muscle spasms from Tymlos would manifest on both sides, and not just one leg?

Jump to this post

daisylou, both spasms from hypercalcemia and spasms from nerve root compression would usually occur on one side.
The PT makes a sensible statement about the pain being caused by a compressed nerve. Your compressed nerve sounds like the sciatic nerve, whereas zygotes sound like the obturator nerve. Is it muscle or joint entrapping the nerve.
In both cases it could be either.
Tymlos is really the (second) best medication for osteoporosis, but it can cause hypercalcemia. And when it causes hypercalcemia it isn't a very efficient medication. Sometime just lowering intake of D3 or Calcium or lowering the dose of Tymlos restores normal calcium. If the sciatic nerve is pinched in the spine (or the obturator is pinched in the hip) there are all sort of minimally invasive procedures or surgeries and physical therapy that can relieve the pain.
You are thinking clearly and may figure this without testing.
I find it wise to test calcium levels with Tymlos and Forteo even without effects. A lumbar MRI can give you clues about canal and facet stenosis or patency.

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@gently

daisylou, both spasms from hypercalcemia and spasms from nerve root compression would usually occur on one side.
The PT makes a sensible statement about the pain being caused by a compressed nerve. Your compressed nerve sounds like the sciatic nerve, whereas zygotes sound like the obturator nerve. Is it muscle or joint entrapping the nerve.
In both cases it could be either.
Tymlos is really the (second) best medication for osteoporosis, but it can cause hypercalcemia. And when it causes hypercalcemia it isn't a very efficient medication. Sometime just lowering intake of D3 or Calcium or lowering the dose of Tymlos restores normal calcium. If the sciatic nerve is pinched in the spine (or the obturator is pinched in the hip) there are all sort of minimally invasive procedures or surgeries and physical therapy that can relieve the pain.
You are thinking clearly and may figure this without testing.
I find it wise to test calcium levels with Tymlos and Forteo even without effects. A lumbar MRI can give you clues about canal and facet stenosis or patency.

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Thank you very much for your input

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@gently

daisylou, both spasms from hypercalcemia and spasms from nerve root compression would usually occur on one side.
The PT makes a sensible statement about the pain being caused by a compressed nerve. Your compressed nerve sounds like the sciatic nerve, whereas zygotes sound like the obturator nerve. Is it muscle or joint entrapping the nerve.
In both cases it could be either.
Tymlos is really the (second) best medication for osteoporosis, but it can cause hypercalcemia. And when it causes hypercalcemia it isn't a very efficient medication. Sometime just lowering intake of D3 or Calcium or lowering the dose of Tymlos restores normal calcium. If the sciatic nerve is pinched in the spine (or the obturator is pinched in the hip) there are all sort of minimally invasive procedures or surgeries and physical therapy that can relieve the pain.
You are thinking clearly and may figure this without testing.
I find it wise to test calcium levels with Tymlos and Forteo even without effects. A lumbar MRI can give you clues about canal and facet stenosis or patency.

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What is your thought on the best medicine for osteoporosis ? Is it evenity?

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@daisylou

What is your thought on the best medicine for osteoporosis ? Is it evenity?

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daisylou, I'm partial to the anabolics primarily because their mechanism of building bone creates the most integrated bone. It isn't the thickest. It is the most durable. Anabolic-bone continues to reshape and realign spicules according to your activities.
My order would be 1 Forteo, 2 Tymlos, 3 bisphosphonates (Reclast, Fosamax . ..) 4 Evenity.
Prolia doesn't make the list.
The best medication for any one of us would be different.
Many have good results with Prolia and Evenity. Some have adverse reactions to Forteo. With autoimmune disease you'd probably avoid the bisphosphonates.
I would take Prolia if it were my only path to avoid fracture.
Forteo is my first and only prescription medication. While it has been an easy medication for me, most of my bias against the the others comes from pub med and patient reports.

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