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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@melodyrobidoux

Does anyone have severe cheek flushing and brain fog from Tymlos? I started injecting Tymlos the evening of 12/2/24. Had a back spasm that felt like labor but faded after 20 minutes. Severe headache and flushing in cheeks that required me to go to bed. Endo suggested to take 80mcg every other day which I did for 4 injections with the only side effect being the flushed cheeks.

Started 80mcg daily on 12/10/24. I’m now 12 days in and experiencing muscle and joint pain all over that responds to Tylenol. I also have daily brain fog and I still have hot flushes in my cheeks that last for 3-4 hours. The flushing is very hot to the touch and very uncomfortable.

I reduced my dose to 40mcg last night and had NO cheek flushing. I’m going to stay at this dose until brain fog and joint/muscle pain resolve. I called my Endo three days ago about side effects from daily 80mcg and haven’t heard back. I proactively decided to reduce the dose. I’m 5’, 124lbs, and 66 yrs old with hip at -3.5 and spine at -3. I took Fosamax for 10 years until growing bone in my jaw and all of the warnings came out. No bone drugs for several years, and then 4 years of annual Reclast (with one holiday) which stabilized bone loss. Started Tymlos this year instead of more Reclast or Prolia.

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I was flushing face and my arms got red and hot. It's scary. Eventually it stopped and I haven't flushed for a couple of months. No brain fog.

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@loplady

Can you tell me about this "I took Fosamax for 10 years until growing bone in my jaw "? I just asked my dentist if bone builders like Tymlos, Evenity and Forteo could build any more torrid in my mouth and he thought no, it worked on just bone mass. I also didn't think any bone growth was possible with Fosamax so curious about this.

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Back when I was taking Fosamax, there was no recommendation to stop taking it within a certain number of years. However, cases of thigh bone fractures and bone growing out of the jaw started being publicized. I saw my dentist about the bone growth in my jaw and he said to stop Fosamax. The bone growth did go away. Taking Fosamax for 10 years is no longer recommended.

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@zygote

I was flushing face and my arms got red and hot. It's scary. Eventually it stopped and I haven't flushed for a couple of months. No brain fog.

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Thank you for that information. I have also noticed flushing on my upper arms. Glad to hear that side effect resolved for you. Are you taking the full dose of 80mcg daily?

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@windyshores

@melodyrobidoux I think many doctors do not know that the Tymlos pen has "clicks" that allow us to adjust the dose. That would explain why your doctor suggested every other day. Alternating days, in my experience, would not help with side effects since Tymlos leaves the body so quickly. Side effects would, I would speculate, be the same on any given day even if you took it once a month!

Many of us on this forum reduce dose (even to 20mcg but you are doing okay on 40mct) and eventually succeed in raising the dose. If you can get to 60mcg my doctor said that was good. I got to 70mcg and had dramatic gains. I was never able to tolerate the full 80mcg. On days when I had something important to do, I took 60mcg and on days when I was home or had a relaxed day, I took 70mcg!

Other things to play around with include time of day. My headaches stopped when I switched to morning. Everyone is different. I have low blood pressure and initially used a blood pressure cuff. If my bp was low I hydrated and had something salty before injecting. You can make this work for you!

My doctor now suggests reducing dose and titrating up for those who have trouble with the full dose. Much better than quitting!

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I agree that there’s no logic in injecting every other day and expecting side effects to go away if Tymlos leaves the body pretty quickly on any given day that it’s injected. Dialing down the dose makes total sense to reduce side effects and let the body adjust to the medication. I very much want to take Tymlos because my T scores are so low. Hopefully, slow and steady will be the answer. Thanks.

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@melodyrobidoux

Does anyone have severe cheek flushing and brain fog from Tymlos? I started injecting Tymlos the evening of 12/2/24. Had a back spasm that felt like labor but faded after 20 minutes. Severe headache and flushing in cheeks that required me to go to bed. Endo suggested to take 80mcg every other day which I did for 4 injections with the only side effect being the flushed cheeks.

Started 80mcg daily on 12/10/24. I’m now 12 days in and experiencing muscle and joint pain all over that responds to Tylenol. I also have daily brain fog and I still have hot flushes in my cheeks that last for 3-4 hours. The flushing is very hot to the touch and very uncomfortable.

I reduced my dose to 40mcg last night and had NO cheek flushing. I’m going to stay at this dose until brain fog and joint/muscle pain resolve. I called my Endo three days ago about side effects from daily 80mcg and haven’t heard back. I proactively decided to reduce the dose. I’m 5’, 124lbs, and 66 yrs old with hip at -3.5 and spine at -3. I took Fosamax for 10 years until growing bone in my jaw and all of the warnings came out. No bone drugs for several years, and then 4 years of annual Reclast (with one holiday) which stabilized bone loss. Started Tymlos this year instead of more Reclast or Prolia.

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melodyrobidoux,
Hypercalcemia can cause all of your symptoms. Tymlos works by pulling calcium from your bones and into your bloodstream suddenly, but temporarily causing hypercalcemia. While, I hold the thought that 80mcg may be a dose too high for lightweights, windyshore's experience indicates that our bodies adjust over time.
Tymlos is said to do little modeling as in the extra bone in your jaw. Tymlos and Forteo are almost entirely remodeling which requires the breaking down of old bone. Tymlos does remodel bone in the jaw, but hasn't been seen to add to mandibular tori the latin term for common in age bone growth on the floor the mouth under the tongue. If the doctor or dentist was referring to bone exposed by osteonecrosis-- which would require you to stop bisphosphonates, Tymlos or Forteo would be the best medication to resolve it.

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@loplady

Can you tell me about this "I took Fosamax for 10 years until growing bone in my jaw "? I just asked my dentist if bone builders like Tymlos, Evenity and Forteo could build any more torrid in my mouth and he thought no, it worked on just bone mass. I also didn't think any bone growth was possible with Fosamax so curious about this.

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loplady, Tymlos and Forteo are the most effective medications for torus osteonecrosis which can be difficult to resolve.
Bisphosphonates cause the bone to become avascular (without good blood supply). The bone then is unable to respond to infection and can become necrotic.
Many of us get harmless torus--bone growth in the roof of the mouth and/or under the tongue. Cause is unknown, but grinding of the teeth is suspected as causitive.
The part bisphosphonates play is in the decay and bone death sometimes, though uncommonly, caused in bisphosphonated bone.

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@gently

melodyrobidoux,
Hypercalcemia can cause all of your symptoms. Tymlos works by pulling calcium from your bones and into your bloodstream suddenly, but temporarily causing hypercalcemia. While, I hold the thought that 80mcg may be a dose too high for lightweights, windyshore's experience indicates that our bodies adjust over time.
Tymlos is said to do little modeling as in the extra bone in your jaw. Tymlos and Forteo are almost entirely remodeling which requires the breaking down of old bone. Tymlos does remodel bone in the jaw, but hasn't been seen to add to mandibular tori the latin term for common in age bone growth on the floor the mouth under the tongue. If the doctor or dentist was referring to bone exposed by osteonecrosis-- which would require you to stop bisphosphonates, Tymlos or Forteo would be the best medication to resolve it.

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The bone started growing out of the gum line when I had taken Fosamax for almost 10 years. That extra bone did go away after stopping Fosamax.

I’m experiencing sensitivity in my lower right teeth the last few days of injecting Tymlos. I’m on day 22 and reduced the dose to 40mcg the last three days. Flushing doesn’t happen at that dose.

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Cognitive Issues - Tymlos
I’m experiencing brain fog or cognitive issues like calling an elephant a giraffe even though I know it’s an elephant in the photo that I’m looking at or saying the name of a hotel incorrectly when my brain knows that’s the wrong name. This is not happening right after injecting Tymlos but is happening at various times prior to the next Tymlos injection.

I injected 40mcg the last three days and 80mcg for the 18 days prior.

Could this be hypercalcemia like @gently mentioned above? I take 1000mg calcium citrate in the morning and another 1000mg at night along with 1000 IU D3 with K2 each time.

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@melodyrobidoux

Cognitive Issues - Tymlos
I’m experiencing brain fog or cognitive issues like calling an elephant a giraffe even though I know it’s an elephant in the photo that I’m looking at or saying the name of a hotel incorrectly when my brain knows that’s the wrong name. This is not happening right after injecting Tymlos but is happening at various times prior to the next Tymlos injection.

I injected 40mcg the last three days and 80mcg for the 18 days prior.

Could this be hypercalcemia like @gently mentioned above? I take 1000mg calcium citrate in the morning and another 1000mg at night along with 1000 IU D3 with K2 each time.

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Did your doctor instruct you to take that much calcium? If not, I would ask how much you should take as everyone’s health issues are different. According to NIH table below, if you are a female, age 51-70, 1200 mg of calcium. This includes food. These are just guidelines so please follow your doctor’s advice.

Table 1: Recommended Dietary Allowances (RDAs) for Calcium [1]
Age Male Female Pregnant Lactating
0–6 months* 200 mg 200 mg
7–12 months* 260 mg 260 mg
1–3 years 700 mg 700 mg
4–8 years 1,000 mg 1,000 mg
9–13 years 1,300 mg 1,300 mg
14–18 years 1,300 mg 1,300 mg 1,300 mg 1,300 mg
19–50 years 1,000 mg 1,000 mg 1,000 mg 1,000 mg
51–70 years 1,000 mg 1,200 mg
>70+ years 1,200 mg 1,200 mg

This is the site the table above came from. Sorry it didn’t copy that well. https://ods.od.nih.gov/factsheets/Calcium-HealthProfessional/

I’ve also read it may be better to take only around 500 mg at a time for better absorption but check with your doc about that too. Also count the amount of calcium you get with food. That all goes towards your total intake.

I’m hoping that someone that knows more than I do will chime in here. It’s the holidays so there may not be as many people on the forum.

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@bluebonnet242

Did your doctor instruct you to take that much calcium? If not, I would ask how much you should take as everyone’s health issues are different. According to NIH table below, if you are a female, age 51-70, 1200 mg of calcium. This includes food. These are just guidelines so please follow your doctor’s advice.

Table 1: Recommended Dietary Allowances (RDAs) for Calcium [1]
Age Male Female Pregnant Lactating
0–6 months* 200 mg 200 mg
7–12 months* 260 mg 260 mg
1–3 years 700 mg 700 mg
4–8 years 1,000 mg 1,000 mg
9–13 years 1,300 mg 1,300 mg
14–18 years 1,300 mg 1,300 mg 1,300 mg 1,300 mg
19–50 years 1,000 mg 1,000 mg 1,000 mg 1,000 mg
51–70 years 1,000 mg 1,200 mg
>70+ years 1,200 mg 1,200 mg

This is the site the table above came from. Sorry it didn’t copy that well. https://ods.od.nih.gov/factsheets/Calcium-HealthProfessional/

I’ve also read it may be better to take only around 500 mg at a time for better absorption but check with your doc about that too. Also count the amount of calcium you get with food. That all goes towards your total intake.

I’m hoping that someone that knows more than I do will chime in here. It’s the holidays so there may not be as many people on the forum.

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I just cut back my calcium to 500mg x2 a day. I don’t drink or eat a lot of cow dairy but I do have Greek yogurt with oat granola everyday. I eat fruit and nuts. Thank you for the calcium information.

My calcium levels on blood work are always towards the low end so I’ve taken 2000 mg a day for years with Vit D3/K2.

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