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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@nwyatt

I tried to ramp up my dosage starting at 2, then 3, then 4 then 6. Back pain came zooming back so I contacted my doctor and she told me to stop. My question is for anyone who stopped, how long did it take for the side effects to go away? My back is still in a vice but it's only been one day.

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@nnnwyatt how long were you at, say, level 4mcg? Maybe you could try staying a little longer on that, then 5, then 6-??? Or event try backing down to 5 clicks from 6. I found the difference between 7 and 8 to be drastic (and puzzling).

I do think that some degree of bone pain is going to happen as we grow bone, just as happened when we were young. "Growing pains." But if not tolerable at a certain level, maybe going down one click could help.

I could not tolerate Forteo (almost fainted) so I get that some people cannot tolerate a med. The adjustability of Tymlos made a huge difference for me but I understand that might not be true for everyone.

Tymlos is gone from the body in hours. The bone growth it stimulates might continue- I have no idea- I just know my doctor wanted me to take it right up to the first dose of my next med! So I assume that meant that residual effect didn't last long. But that is speculation and your doctor could answer that!

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@windyshores

@nnnwyatt how long were you at, say, level 4mcg? Maybe you could try staying a little longer on that, then 5, then 6-??? Or event try backing down to 5 clicks from 6. I found the difference between 7 and 8 to be drastic (and puzzling).

I do think that some degree of bone pain is going to happen as we grow bone, just as happened when we were young. "Growing pains." But if not tolerable at a certain level, maybe going down one click could help.

I could not tolerate Forteo (almost fainted) so I get that some people cannot tolerate a med. The adjustability of Tymlos made a huge difference for me but I understand that might not be true for everyone.

Tymlos is gone from the body in hours. The bone growth it stimulates might continue- I have no idea- I just know my doctor wanted me to take it right up to the first dose of my next med! So I assume that meant that residual effect didn't last long. But that is speculation and your doctor could answer that!

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Thanks but it's not bone pain per say but in the muscles. The only amount where I didn't get pain was 2 clicks. I just don't think this one agrees with me. Now I'm just hoping my doctor can get my insurance to switch me back to Forteo without having to pay the full amount. I'm not sure how they expect people to afford these meds that we need. I'm also reading Back Mechanic and trying to be very conscious of my movements throughout the day. Hard to believe only 2 1/2 years ago I was running, playing with my grandkids, etc. Really humbling and frustrating.

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@nwyatt

Thanks but it's not bone pain per say but in the muscles. The only amount where I didn't get pain was 2 clicks. I just don't think this one agrees with me. Now I'm just hoping my doctor can get my insurance to switch me back to Forteo without having to pay the full amount. I'm not sure how they expect people to afford these meds that we need. I'm also reading Back Mechanic and trying to be very conscious of my movements throughout the day. Hard to believe only 2 1/2 years ago I was running, playing with my grandkids, etc. Really humbling and frustrating.

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The hormone leaves the system quickly, but it might not be the hormone. You might suspect an allergic reaction to one of the excipients, probably the preservative. @windyshores how long did it take for you reaction to stop after you lowered the dose?

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@gently

The hormone leaves the system quickly, but it might not be the hormone. You might suspect an allergic reaction to one of the excipients, probably the preservative. @windyshores how long did it take for you reaction to stop after you lowered the dose?

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Pretty quickly as I remember.

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@nwyatt sure does sound like Tymlos doesn't agree with you! Hope you can get on Forteo. I agree about cost!

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@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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I took 3rd dose of Tymlos and had severe back spasm that went to my chest . Like a heart attack. Had to go to ER .

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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

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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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

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 bisphosphonates build bone by reducing bone turnover so the bone density increase is not from new bone. Tymlos and Forteo build new bone (filling it in). Evenity does both, new bone first and then it reduces turnover.

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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 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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