So, I’ve been attempting to begin a new prescription of Tymlos. I’ve been reading and hearing so many folks explaining how they began their own use by the method of titration. Literally clicking the Tymlos pen only 2 clicks to introduce their bodies to the drug. I have a wonderful rheumatologist who said she spoke with the manufacturer and they had no information regarding beginning by doing “less clicks” on the pen. In fact, she couldn’t confirm that by doing that any of the drug would be released. So, after reading so many posts about women using the process of beginning with say 20 mg of the drug as opposed to 80, which is what is prescribed. I’m left still with the question about whether or not you are getting a dose if less clicks are used! I welcome any responses of anyone with experiences that sound like this. Thank you all so much!
pgn@pn It seems that the drug is so new that everyone has to make the experimentation themself (by titration). I will wait for your further results. TY for your reseacrh.
So, I’ve been attempting to begin a new prescription of Tymlos. I’ve been reading and hearing so many folks explaining how they began their own use by the method of titration. Literally clicking the Tymlos pen only 2 clicks to introduce their bodies to the drug. I have a wonderful rheumatologist who said she spoke with the manufacturer and they had no information regarding beginning by doing “less clicks” on the pen. In fact, she couldn’t confirm that by doing that any of the drug would be released. So, after reading so many posts about women using the process of beginning with say 20 mg of the drug as opposed to 80, which is what is prescribed. I’m left still with the question about whether or not you are getting a dose if less clicks are used! I welcome any responses of anyone with experiences that sound like this. Thank you all so much!
I started Tymlos on 2 clicks, meaning to go up slowly because I am working as a voting assistant in early voting and the general election in Florida and we are talking about 14 hour shifts (possibly every other day for three weeks) and not knowing if I would experience side effects so I wanted to be cautious. I did by mistake go up 3 clicks on day 2 (I have continued that) and I definitely have some of the faster heartbeat for several hours, not crazy, but noticeable. That’s all, though, on 3. I plan after the election to start 4 and keep going up slowly. I feel like it’s better for me than going up fast and having a more pronounced reaction. I must say I am on meds for afib and fast heartbeat already (have had 4 cardiac ablations for arrhythmia) so I am a human ekg monitor. I can feel exactly when something is different. I am quite sure going up on the dose slowly is right for me, even if it means there is no real therapeutic benefit for me yet. Do what feels right for you, its a long time we’re on this medication anyway!
I started Tymlos on 2 clicks, meaning to go up slowly because I am working as a voting assistant in early voting and the general election in Florida and we are talking about 14 hour shifts (possibly every other day for three weeks) and not knowing if I would experience side effects so I wanted to be cautious. I did by mistake go up 3 clicks on day 2 (I have continued that) and I definitely have some of the faster heartbeat for several hours, not crazy, but noticeable. That’s all, though, on 3. I plan after the election to start 4 and keep going up slowly. I feel like it’s better for me than going up fast and having a more pronounced reaction. I must say I am on meds for afib and fast heartbeat already (have had 4 cardiac ablations for arrhythmia) so I am a human ekg monitor. I can feel exactly when something is different. I am quite sure going up on the dose slowly is right for me, even if it means there is no real therapeutic benefit for me yet. Do what feels right for you, its a long time we’re on this medication anyway!
Thank you so much for your response. I’m convinced now that starting it at a lower dose will be okay. Quite honestly, I admire your bravery considering your heart challenges to begin with! Apparently, even with your challenges you deal with, they feel the benefit will outweigh the risk.
Thanks too for your civil duty during this election! That’s enough to make your heart race 😊.
Thanks again 😊
pgn@pn It seems that the drug is so new that everyone has to make the experimentation themself (by titration). I will wait for your further results. TY for your reseacrh.
@tilou Tymlos is not that new. I originally wrote about titrating because I could not tolerate a full dose and I was desperate to make it work. It was a personal experiment that seems to have spread, which is a good thing in most cases. But many people do tolerate a full dose at the start.
Like @jennirdh I have afib with heart rate close to 200 every once in awhile and had to be careful. l landed at 7 out of 8 clicks long term and had excellent gains with few side effects.
Greetings @foxylady75, and Welcome to Mayo Connect. My experience with Tymlos was interesting and without any negative reactions. #1. My mother never shared anything about osteoporosis with me. #2. I was on the medication that frightened the world in 1995. I was living in Hawaii where the important news on page one was usually about Asian countries. By the time I became aware of the "danger" of breast cancer........I simply stopped taking the medication and prayed that I had escaped the threat.
Finally, when I was 74, my PCP here on the mainland ordered scans and told me that I needed to be on some preventive osteoporosis medication. She mentioned three options and I chose Tymlos because it was the least expensive. It was just my luck that in addition to being able to afford it, I had absolutely no side effects.
I was also grateful to see better scan scores at the end of my Tymlos journey. The only feature I missed was the ability to monitor the dosage. However, I was lucky to be able to have a full dose every morning without any negative reactions.
Good luck on your journey. It will be helpful!
Chris
@tilou Tymlos is not that new. I originally wrote about titrating because I could not tolerate a full dose and I was desperate to make it work. It was a personal experiment that seems to have spread, which is a good thing in most cases. But many people do tolerate a full dose at the start.
Like @jennirdh I have afib with heart rate close to 200 every once in awhile and had to be careful. l landed at 7 out of 8 clicks long term and had excellent gains with few side effects.
Windyshores you are an inspiration to me! Thanks for all your great info. As you know afib and tachycardia are unpleasant, so want to avoid if at all possible having to be converted back to sinus rhythm. I may actually get to where I take Tymlos in the morning bc when I’m busy it’s easier to not focus on my heartbeat than at night when I’m trying to relax and go to sleep.
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I am 70. I am also interested I want to try other options before taking Osteo meds.
Not yet but might!
pgn@pn It seems that the drug is so new that everyone has to make the experimentation themself (by titration). I will wait for your further results. TY for your reseacrh.
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2 ReactionsI started Tymlos on 2 clicks, meaning to go up slowly because I am working as a voting assistant in early voting and the general election in Florida and we are talking about 14 hour shifts (possibly every other day for three weeks) and not knowing if I would experience side effects so I wanted to be cautious. I did by mistake go up 3 clicks on day 2 (I have continued that) and I definitely have some of the faster heartbeat for several hours, not crazy, but noticeable. That’s all, though, on 3. I plan after the election to start 4 and keep going up slowly. I feel like it’s better for me than going up fast and having a more pronounced reaction. I must say I am on meds for afib and fast heartbeat already (have had 4 cardiac ablations for arrhythmia) so I am a human ekg monitor. I can feel exactly when something is different. I am quite sure going up on the dose slowly is right for me, even if it means there is no real therapeutic benefit for me yet. Do what feels right for you, its a long time we’re on this medication anyway!
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2 ReactionsThank you so much for your response. I’m convinced now that starting it at a lower dose will be okay. Quite honestly, I admire your bravery considering your heart challenges to begin with! Apparently, even with your challenges you deal with, they feel the benefit will outweigh the risk.
Thanks too for your civil duty during this election! That’s enough to make your heart race 😊.
Thanks again 😊
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2 ReactionsI admire you as well! Take care of yourself. Stress is not a girl's best friend! 💜
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1 ReactionTymlos - need to know more about possible reactions from this drug
@tilou Tymlos is not that new. I originally wrote about titrating because I could not tolerate a full dose and I was desperate to make it work. It was a personal experiment that seems to have spread, which is a good thing in most cases. But many people do tolerate a full dose at the start.
Like @jennirdh I have afib with heart rate close to 200 every once in awhile and had to be careful. l landed at 7 out of 8 clicks long term and had excellent gains with few side effects.
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Like -
Helpful -
Hug
1 ReactionGreetings @foxylady75, and Welcome to Mayo Connect. My experience with Tymlos was interesting and without any negative reactions. #1. My mother never shared anything about osteoporosis with me. #2. I was on the medication that frightened the world in 1995. I was living in Hawaii where the important news on page one was usually about Asian countries. By the time I became aware of the "danger" of breast cancer........I simply stopped taking the medication and prayed that I had escaped the threat.
Finally, when I was 74, my PCP here on the mainland ordered scans and told me that I needed to be on some preventive osteoporosis medication. She mentioned three options and I chose Tymlos because it was the least expensive. It was just my luck that in addition to being able to afford it, I had absolutely no side effects.
I was also grateful to see better scan scores at the end of my Tymlos journey. The only feature I missed was the ability to monitor the dosage. However, I was lucky to be able to have a full dose every morning without any negative reactions.
Good luck on your journey. It will be helpful!
Chris
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Helpful -
Hug
2 ReactionsWindyshores you are an inspiration to me! Thanks for all your great info. As you know afib and tachycardia are unpleasant, so want to avoid if at all possible having to be converted back to sinus rhythm. I may actually get to where I take Tymlos in the morning bc when I’m busy it’s easier to not focus on my heartbeat than at night when I’m trying to relax and go to sleep.
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