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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idlehands | @idlehands | Mar 28 7:00am
In reply to @leo001 "Hi I just started Tymlos with no direction from my provider nor the company but from..." + (show)
@leo001

Hi I just started Tymlos with no direction from my provider nor the company but from day one I have severe labor like pain cramps loss and mobility on the hips thighs and legs and it lasts about 20 minutes I don't think I can continue the medication is brutal thank you for posting your side effects

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@leo001 I'm not sure how much help they'd be, but Tymlos has Clinical Educators to provide instruction and information about the medicine and the injection procedure. I'd have expected them to reach out to you when the order for Tymlos was placed by your doc, but you can certainly initiate it. If you go to Tymlos.com and click on the Support+Resources header, then on Treatment Support, and scroll down, you'll find a phone number you can call and also a link to register for 1-on-1 support.

All that said, I wouldn't be surprised if they told you that your reactions to the medicine should be addressed by your doctor. 😱

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tkdesign | @tkdesign | Mar 28 7:44am
In reply to @gently "leo001, it may be that the dose is a little too high for you. You might..." + (show)
@gently

leo001, it may be that the dose is a little too high for you. You might try a half dose four clicks. But I wouldn't keep injecting if it continues to cause that pain, cramps or loss of mobility. I' d hate to see you stop Tymlos because it is such an excellent bone builder. And and and the other medications might have more miserable side effects. I'm sorry you didn't get guidance, but add that most of us don't. Many physicians are unaware that you can lower the dose. And unaware that some of our bodies take time to adjust.
You might try Forteo. It is a lower dose of the same type of medication with the same advantages and (I think) fewer side effects.
You should contact the prescribing physician, even if you aren't likely to get any advice. At least they prescribed the best medication.
Is your response in the first minutes or hours.
The medicine works by pulling calcium into the serum. It draws more calcium from the digestive tract, the kidneys and the bones. It may be this temporary hypercalcemia that is causing your discomfort. Alternately, you might be allergic to the preservative.

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I thought the drug should pull calcium away from the blood and put it into the bones? How does it help if it takes calcium out of your bones?

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1 reply
tkdesign | @tkdesign | Mar 28 7:45am

I had an excruciating headache from taking it one time. So I am going to try again at a quarter of the dose with drs approval. You can adjust the dose of Tymlos unlike Forteo. It would be nice if they did some studies to see if one could get benefits at a lower dose, especially if one is a much lower body weight.

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gently | @gently | Mar 28 9:13am
In reply to @tkdesign "I thought the drug should pull calcium away from the blood and put it into the..." + (show)
@tkdesign

I thought the drug should pull calcium away from the blood and put it into the bones? How does it help if it takes calcium out of your bones?

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tkdesign,
parathyroid hormone doesn't direct calcium from the blood to the bone. The purpose of the parathyroid is to maintain adequate calcium levels in the blood to guarantee there is enough calcium for other organs, like the brain.
The way both Tymlos and Forteo work is by introducing the hormone in brief daily bursts, signaling other actors your body is losing bone. This triggers the cells that build bone rather dramatically.
While our bones store calcium, so does our blood. Only 1% of the serum calcium is said to be ionized or metabolically active. We can measure ionized calcium along with PHT levels to determine if the gland is overactive. Constant levels of high parathyroid hormone cause osteoporosis.
t

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1 reply
tkdesign | @tkdesign | Mar 28 10:24am
In reply to @gently "tkdesign, parathyroid hormone doesn't direct calcium from the blood to the bone. The purpose of the..." + (show)
@gently

tkdesign,
parathyroid hormone doesn't direct calcium from the blood to the bone. The purpose of the parathyroid is to maintain adequate calcium levels in the blood to guarantee there is enough calcium for other organs, like the brain.
The way both Tymlos and Forteo work is by introducing the hormone in brief daily bursts, signaling other actors your body is losing bone. This triggers the cells that build bone rather dramatically.
While our bones store calcium, so does our blood. Only 1% of the serum calcium is said to be ionized or metabolically active. We can measure ionized calcium along with PHT levels to determine if the gland is overactive. Constant levels of high parathyroid hormone cause osteoporosis.
t

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My PHT has been consistently high for a long time. So will these drugs still work? Does one need to stop taking supplemental calcium when on these drugs? My dr had said i had low urine calcium, but adequate in blood, so she said to take extra calcium. Now that I"m starting on these drugs i don't know what to do.

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1 reply
susanjohnston | @susanjohnston | Mar 28 1:29pm
In reply to @gently "daisylou, both spasms from hypercalcemia and spasms from nerve root compression would usually occur on one..." + (show)
@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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This was very helpful. Thank you. Do you have any experience or knowledge regarding if following a year on Tymlos with Fosomax instead of Reclast can be effective?

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2 replies
njx58 | @njx58 | Mar 28 6:51pm
In reply to @susanjohnston "This was very helpful. Thank you. Do you have any experience or knowledge regarding if following..." + (show)
@susanjohnston

This was very helpful. Thank you. Do you have any experience or knowledge regarding if following a year on Tymlos with Fosomax instead of Reclast can be effective?

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Those are the choices. I will be faced with that later this year. The doctor mentioned both, so I assume either one will work. I'm hesitant about Reclast since it's an infusion and there's no undoing it, but supposedly it works better. I'll think about it when the time comes!

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gently | @gently | Mar 28 8:47pm
In reply to @susanjohnston "This was very helpful. Thank you. Do you have any experience or knowledge regarding if following..." + (show)
@susanjohnston

This was very helpful. Thank you. Do you have any experience or knowledge regarding if following a year on Tymlos with Fosomax instead of Reclast can be effective?

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I seem to recall a chart, and I'll look for it.

My thoughts are that following Tymlos or Forteo with Fosamax is preferrable over Reclast.

But first, if you take the Reclast injection, you don't have to worry about osteoporosis medication for a year or maybe two. The medication would maintain the density gains on Tymlos without much if any increase in density. And without gain in the structural integrity of the bone.
You probably know that the bisphosphonates prevent the normal acquisition of bone gained through remodeling. These antiresorptive medications work by preventing cells dedicated to removing fissured or weakened bone from reaching the bone. The add bone density by accumulating older bone.
If I ever have to stop taking Forteo, I'll take Risedronate because it is less effective and less enduring in the bone that Reclast or Fosamax.
Taking Tymlos or Forteo after any of the bisphosphonates blunts the effectiveness of those bone building drugs.
I haven't mentioned the risk of side effects which would be far milder than Fosamax, unless you are one of the many who don't suffer with these medication.
Bless your choice with wisdom and luck .

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1 reply
gently | @gently | Mar 29 2:26am
In reply to @tkdesign "My PHT has been consistently high for a long time. So will these drugs still work?..." + (show)
@tkdesign

My PHT has been consistently high for a long time. So will these drugs still work? Does one need to stop taking supplemental calcium when on these drugs? My dr had said i had low urine calcium, but adequate in blood, so she said to take extra calcium. Now that I"m starting on these drugs i don't know what to do.

Jump to this post

tkdesign,
usually we take calcium with Tymlos and Forteo and vitamin D3. D levels often drop because PTH uses it effectively to increase absorption from the digestive tract.
The low urine calcium could be that already elevated PTH is pulling calcium back from the kidneys before it can get to the bladder.
You are a bit of a mystery because of consistently high PTH may have contributed to your bone loss. How high might yield a better clue. I would want an ionized serum calcium
level to help understand.
I would take the md's advice about calcium and take D with frequent labs to see if the parathyroid gland is just adequately responding to low calcium availability.
Are you using bone markers.

REPLY
1 reply
tkdesign | @tkdesign | Mar 29 7:24am
In reply to @gently "tkdesign, usually we take calcium with Tymlos and Forteo and vitamin D3. D levels often drop..." + (show)
@gently

tkdesign,
usually we take calcium with Tymlos and Forteo and vitamin D3. D levels often drop because PTH uses it effectively to increase absorption from the digestive tract.
The low urine calcium could be that already elevated PTH is pulling calcium back from the kidneys before it can get to the bladder.
You are a bit of a mystery because of consistently high PTH may have contributed to your bone loss. How high might yield a better clue. I would want an ionized serum calcium
level to help understand.
I would take the md's advice about calcium and take D with frequent labs to see if the parathyroid gland is just adequately responding to low calcium availability.
Are you using bone markers.

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What are bone markers?

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