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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I was lazy today and stayed in bed feeling awful after my shot. I got up to take the trash out, do laundry etc. and almost immediately felt better. This has been my consistent experience but I understand it doesn't apply to everyone!

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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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Hi, cloud 60-- If it's any comfort or help to you, I can't get beyond a 4 right now-- and I'm approaching the 3-month mark. I try 5 every once in a while, and it's just too much. Plus, my hair is falling out, which is inducing a lot of anxiety. (My doctor, who I really like, says this is hair "shedding" not hair "loss". Welcome to the world of semantics.) Anyway, who knows if I can ever get beyond a 4 or if it will even turn out to be a therapeutic dose for me. (I'm very small.) There's not a day that goes by that I think, "This isn't for me." And then I give myself the shot.

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@lnl

Hi, cloud 60-- If it's any comfort or help to you, I can't get beyond a 4 right now-- and I'm approaching the 3-month mark. I try 5 every once in a while, and it's just too much. Plus, my hair is falling out, which is inducing a lot of anxiety. (My doctor, who I really like, says this is hair "shedding" not hair "loss". Welcome to the world of semantics.) Anyway, who knows if I can ever get beyond a 4 or if it will even turn out to be a therapeutic dose for me. (I'm very small.) There's not a day that goes by that I think, "This isn't for me." And then I give myself the shot.

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Hi! Thank you so much for writing. I’ve never tried 5. I’ve done 4 nights of 4 and the gives me lightheaded headache and dizzy and then I fall asleep for an hour and this is all when I take the shot between 8-9 pm . I wake up nauseous in the morning for an hour. I haven’t decided when I should do the 5. I had a huge hair clump fall out when I tried fosamax for a week. But shedding is just strands/ pieces not big clump. I don’t like Tymlos either and sometimes I wish I could go back to risondronate which is actonel which I tried only two days but if you do bisphosphonate before anabolic you don’t get as good a result on anabolic. Tymlos has a lot of side effects. What time of day do you do your shots ?

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@cloud60

Hi! Thank you so much for writing. I’ve never tried 5. I’ve done 4 nights of 4 and the gives me lightheaded headache and dizzy and then I fall asleep for an hour and this is all when I take the shot between 8-9 pm . I wake up nauseous in the morning for an hour. I haven’t decided when I should do the 5. I had a huge hair clump fall out when I tried fosamax for a week. But shedding is just strands/ pieces not big clump. I don’t like Tymlos either and sometimes I wish I could go back to risondronate which is actonel which I tried only two days but if you do bisphosphonate before anabolic you don’t get as good a result on anabolic. Tymlos has a lot of side effects. What time of day do you do your shots ?

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I was on Actonel for a little over a year, but some of my numbers got worse; that's why I'm on Tymlos now. I could tolerate Actonel (mostly), but it wasn't working. I take the shot in the evening. I've settled on this after going back and forth from morning to evening. The reason I do it at night is that I get those awful heart palpitations from the shot. The Tymlos nurse (you can get assigned one from the Tymlos website) recommended that I lie down and elevate my legs to lessen the effect. It absolutely works. So, I figured if I was going to be lying down, it might as well be in the evening. It has turned my shot, which takes seconds, into a "thing" that can last 30 minutes. I don't feel any side effects by morning.

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You are going to have side effects with Tymlos. If you have side effects in the morning, from an evening shot, I suggest trying a morning shot and walking around, not staying in bed or on couch. But that's me.

When I have posted about ramping up and letting the body adjust, I didn't mean to give the impression that there would be no side effects.

I am very motivated because of my fractures and with scores below -3.5, there should be a reason for motivation too, though it is more abstract I think! For me, tolerability was staying out of the ER. Even the worse side effects I have ever had are over after 2-3 hours.

I am small too. My doc did say that a half dose is better than nothing but I would be nervous not getting to 6. You may not find there is that much difference between 4 and 6, or maybe it will be much harder. It is so individual. I find there is variability in side effects from day to day even on the same dose.

You can have a P1NP test to see how it is working at 4 clicks. And also a CTX which is more about turnover. That might be reassuring that you can stay on 4.

I am going to do 8 clicks for my last two months. I don't care how badly I feel at this point!

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@lnl

I was on Actonel for a little over a year, but some of my numbers got worse; that's why I'm on Tymlos now. I could tolerate Actonel (mostly), but it wasn't working. I take the shot in the evening. I've settled on this after going back and forth from morning to evening. The reason I do it at night is that I get those awful heart palpitations from the shot. The Tymlos nurse (you can get assigned one from the Tymlos website) recommended that I lie down and elevate my legs to lessen the effect. It absolutely works. So, I figured if I was going to be lying down, it might as well be in the evening. It has turned my shot, which takes seconds, into a "thing" that can last 30 minutes. I don't feel any side effects by morning.

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Do you think amount of food in stomach plays a role in side effects? I can try the elevate feet thing but I am not having a heart rate symptom that i know of. What city are you in? My dr only wants 8 clicks so I don’t feel comfortable telling him I am doing less.
The actonel would have cost me $50 per month and Tymlos is free bc of manufacture program that picks up the copay.

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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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Idk if I should go to 5 . Certainly get really tired
Lightheaded have to go to bed basically and sleep after an hour after the shot then wake up nauseous but not that nad. One thing I think i am sleeping better from it but that might just be relaxed over weekend

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@cloud60

Do you think amount of food in stomach plays a role in side effects? I can try the elevate feet thing but I am not having a heart rate symptom that i know of. What city are you in? My dr only wants 8 clicks so I don’t feel comfortable telling him I am doing less.
The actonel would have cost me $50 per month and Tymlos is free bc of manufacture program that picks up the copay.

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I'm in Atlanta. I don't know about food. I'm not getting nauseous from the Tymlos. Re 4 clicks: I think mostly my doctor wants me to get something into my system.

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@windyshores

You are going to have side effects with Tymlos. If you have side effects in the morning, from an evening shot, I suggest trying a morning shot and walking around, not staying in bed or on couch. But that's me.

When I have posted about ramping up and letting the body adjust, I didn't mean to give the impression that there would be no side effects.

I am very motivated because of my fractures and with scores below -3.5, there should be a reason for motivation too, though it is more abstract I think! For me, tolerability was staying out of the ER. Even the worse side effects I have ever had are over after 2-3 hours.

I am small too. My doc did say that a half dose is better than nothing but I would be nervous not getting to 6. You may not find there is that much difference between 4 and 6, or maybe it will be much harder. It is so individual. I find there is variability in side effects from day to day even on the same dose.

You can have a P1NP test to see how it is working at 4 clicks. And also a CTX which is more about turnover. That might be reassuring that you can stay on 4.

I am going to do 8 clicks for my last two months. I don't care how badly I feel at this point!

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Windyshores, you are an inspiration to us all. I spend so much mental energy thinking about this drug and administering it (sometimes I still bruise), that I need to hear that people are truly making gains on it. I give myself pep talks all the time: you made it 3 months; you can make it 3 months more. Continued good luck on your journey.

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@lnl

Windyshores, you are an inspiration to us all. I spend so much mental energy thinking about this drug and administering it (sometimes I still bruise), that I need to hear that people are truly making gains on it. I give myself pep talks all the time: you made it 3 months; you can make it 3 months more. Continued good luck on your journey.

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@lnl I have done more than 18 months! 20% gain in spine, from severe osteoporosis at -3.7 to borderline at -2.5 and so much stronger. Hip went from -3.3 to -2.9 but femur neck -4.1 to -3.6 so still a concern.

About food with Tymlos. I hydrate and eat something like crackers. Not a lot. In the beginning because my blood pressure is often low I would aim for something salty and drank a big glass of water, and then used my bp cuff. I relaxed with this over time!

If anyone is light headed or dizzy, it might be good to get a blood pressure cuff and maybe an oximeter that shows O2 and pulse. It is at least reassuring.

I lay down and put my feet up for months but I am still doing better getting up and moving!

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