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