How long does it take for Tymlos side effects to subside?

Posted by rhondat1964 @rhondat1964, Jun 12, 2023

I’ve been in Tymlos for two months now and have bone pain, dizziness and just overall aches and pains. Does this get better?

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@windyshores

3-4 fractures from a severely traumatic fall 2006
2-3 osteoporotic fractures from a movement similar to
putting a bathing suit on while sitting

My spine was -3.7 in June 2021. And -2.5 in April 2023.
My hip was -3.4 and now -2.9.
Femur neck was -4.1, now -3.6.

I did 5 years of letrozole for breast cancer, which eliminates estrogen and affects bones. Most do Reclast during that treatment but my endo was afraid of afib with it (now disproven). I may have had those great results because I have never been able to be on any other meds, and also because there may have been an estrogen boost when I stopped letrozole in 2020, who knows. Also although the DEXA machine was the same, the technicians did different "areas of interest." They omitted the fractured vertebrae but you never know if arthritis affected it as well. At any rate, no new fractures since 4/2021! I can't lift 5 lbs. let alone 100.

I didn't do too badly with 8 clicks today.

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Have to tried starting with 1 lb you could work your way up ?
I am keeping your numbers and changes bc they inspire me that with Tymlos maybe I can get out of the 4S for my spine. I would love that.
I go to the gym every day now. Even if it’s 10 minutes on stair machine. Even getting on That machine takes agility.

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@windyshores

3-4 fractures from a severely traumatic fall 2006
2-3 osteoporotic fractures from a movement similar to
putting a bathing suit on while sitting

My spine was -3.7 in June 2021. And -2.5 in April 2023.
My hip was -3.4 and now -2.9.
Femur neck was -4.1, now -3.6.

I did 5 years of letrozole for breast cancer, which eliminates estrogen and affects bones. Most do Reclast during that treatment but my endo was afraid of afib with it (now disproven). I may have had those great results because I have never been able to be on any other meds, and also because there may have been an estrogen boost when I stopped letrozole in 2020, who knows. Also although the DEXA machine was the same, the technicians did different "areas of interest." They omitted the fractured vertebrae but you never know if arthritis affected it as well. At any rate, no new fractures since 4/2021! I can't lift 5 lbs. let alone 100.

I didn't do too badly with 8 clicks today.

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I am getting lightheadedness and dizziness. It’s my third day on 4. I am
scared to go to 5, what do you think ?

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@windyshores

3-4 fractures from a severely traumatic fall 2006
2-3 osteoporotic fractures from a movement similar to
putting a bathing suit on while sitting

My spine was -3.7 in June 2021. And -2.5 in April 2023.
My hip was -3.4 and now -2.9.
Femur neck was -4.1, now -3.6.

I did 5 years of letrozole for breast cancer, which eliminates estrogen and affects bones. Most do Reclast during that treatment but my endo was afraid of afib with it (now disproven). I may have had those great results because I have never been able to be on any other meds, and also because there may have been an estrogen boost when I stopped letrozole in 2020, who knows. Also although the DEXA machine was the same, the technicians did different "areas of interest." They omitted the fractured vertebrae but you never know if arthritis affected it as well. At any rate, no new fractures since 4/2021! I can't lift 5 lbs. let alone 100.

I didn't do too badly with 8 clicks today.

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Do you think omitting the fractured vertebrae alone gave you more reliable results.

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@cloud60

Do you think omitting the fractured vertebrae alone gave you more reliable results.

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@cloud60 fractured vertebrae throw off the DEXA.

I am able to life enough now that I can function in life. The issue with lifting, opening windows etc, started in 2006 after the fall, with non-osteoporotic fractures. With Tymlos I have actually become stronger.

@cloud60 you can stay at 4 clicks for a couple more days, but yes keep pushing up to reach at least 6 clicks, which my doc felt was therapeutic. You are going to have side effects. The question is are they tolerable, do they last all day, do you need medical care for them? And remember your scores are seriously low and fractures are a lot worse than any side effects.

As always, I am not a medical professional so discuss these things with your doc, as I did!

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@cloud60 from the insert:

Dizziness or fast heartbeat may occur within 4 hours after using this medication. If these effects occur, sit or lie down right away. These symptoms usually go away within a few hours. These effects should go away after several doses as your body adjusts to the medication. Redness/pain/swelling at the injection site may also occur. If any of these effects last or get worse, tell your doctor or pharmacist promptly.
To reduce the risk of dizziness and lightheadedness, get up slowly when rising from a sitting or lying position.

ps I did 8 clicks yesterday with few side effects, and today I did 7 and am in bed. It varies from day to day! If you have something important to do, once you get up to a higher dose, you can back off a click or two to function!

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@windyshores I agree. Fractures are way worse than any side effect. They are super painfull and incapacitating, especially thoracic ones. Some days, I was sleepy, but couldn’t go to sleep because there was not one single position in which I could lie down and not be in excruciating pain.
Side effects should begin to subside after your body gets used to the medication.
It worked for me to wait until my side effects were significantly better before going up another click.

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@windyshores

@cloud60 from the insert:

Dizziness or fast heartbeat may occur within 4 hours after using this medication. If these effects occur, sit or lie down right away. These symptoms usually go away within a few hours. These effects should go away after several doses as your body adjusts to the medication. Redness/pain/swelling at the injection site may also occur. If any of these effects last or get worse, tell your doctor or pharmacist promptly.
To reduce the risk of dizziness and lightheadedness, get up slowly when rising from a sitting or lying position.

ps I did 8 clicks yesterday with few side effects, and today I did 7 and am in bed. It varies from day to day! If you have something important to do, once you get up to a higher dose, you can back off a click or two to function!

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Yes while I know it’s not good for you. I switched to evening shots in order to sit and not lie down through the side effects. I am now keeping to about 8 pm. I feel like the dizziness/ headache is hard enough at 4 clicks but maybe I could handle 5. Also I wake up feeling nauseous both in the night and at wake up I think it’s an affected my appetite so that I just don’t care about food much now. I also think it’s affected my mood but who knows about that.
I don’t know when to try 5. I guess I could try tonight idk what to do or when

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@cloud60

Yes while I know it’s not good for you. I switched to evening shots in order to sit and not lie down through the side effects. I am now keeping to about 8 pm. I feel like the dizziness/ headache is hard enough at 4 clicks but maybe I could handle 5. Also I wake up feeling nauseous both in the night and at wake up I think it’s an affected my appetite so that I just don’t care about food much now. I also think it’s affected my mood but who knows about that.
I don’t know when to try 5. I guess I could try tonight idk what to do or when

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Don't push to 5 if you don't feel ready.

The reason I switched to morning (when I restarted, so aside from heart issues) is that I woke up with headache and nausea. Side effects for me were better in the morning. I wonder if being more active moves it through the system or something???!!!! At any rate, regardless of timing, I feel better if I get up and go out even with dizziness or weakness or whatever, than I do staying in bed. But everyone is different. Also your body will adjust....so maybe give it a few days at 4 clicks. I believe even that half dose helps- my doc preferred 6 but told me half is better than none.

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@windyshores

Don't push to 5 if you don't feel ready.

The reason I switched to morning (when I restarted, so aside from heart issues) is that I woke up with headache and nausea. Side effects for me were better in the morning. I wonder if being more active moves it through the system or something???!!!! At any rate, regardless of timing, I feel better if I get up and go out even with dizziness or weakness or whatever, than I do staying in bed. But everyone is different. Also your body will adjust....so maybe give it a few days at 4 clicks. I believe even that half dose helps- my doc preferred 6 but told me half is better than none.

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You’ve helped me that I don’t have to rush . Idk that first hour after the shot I especially like at home so evening seems good but I believe for you and maybe me if I do day time that both moving around, eating drinking, being distracted would help but I switched bc of the first hour fog / dizzy

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@cloud60

You’ve helped me that I don’t have to rush . Idk that first hour after the shot I especially like at home so evening seems good but I believe for you and maybe me if I do day time that both moving around, eating drinking, being distracted would help but I switched bc of the first hour fog / dizzy

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Evening may work better for you but if you wake up feeling awful, try morning. But not the next morning! If you feel better after an hour, that is definitely a good sign!

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