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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Thank you @windyshores !
You’ve been a real live saver in this process. Thank you for shedding so much light.
Symptoms have been very variable for me too.
For some reason, they seem to improve with mild to moderate physical activity, but worsen if I overdo it. So even on those days when I feel zero energy, I try not to stay in bed or the couch all day, but I take it really easy.
Whatever works.

REPLY
@mmodestti

I was too. I started out at 3 clicks, mostly because I was scared of side effects, and because @windyshores was super helpful in these chats explaining how we could start at a lower dose and work our way to a therapeutic dose. I discussed it with my endocrinologist, who said she didn't have a problem with that as long as I reached a therapeutic dose as soon as possible.
So I went up a click every 3-4 days. Everything was beautiful until I reached 6 clicks, where I started to feel nauseous, and tired, and had some palpitations. But it really was very tolerable and I took it as a sign that I was reaching my therapeutic dose. I tried 7, but I definitely wasn't ready, so Y skipped a day, went down to 5, and worked my way back to 6. I have been at 6 for a couple of weeks and the effects have diminished notably (still a little nauseous, a couple of hip or lower back pain here and there, but very tolerable.

If you go to http://www.tymlos.com, they have a great video on how to prep the pen for the first time and how to use it. I only used that video and found it was a lot easier to get used to than I would have thought. I have read a few studies about results and am very grateful to have found this alternative. I have suffered 8 vertebral fractures (5 lumbar and 3 thoracic) and two rib fractures. That is way worse than any side effect.
I prepared a table where I track my dosing and side effects to discuss with my doctor. Here is a screenshot if you might find it useful. I have duplicated it and have a new tab for each pen.

I wish you success with your treatment.

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Thank you very much for explaining all of that. My Tymlos pen is arriving today and I am anxious to get the medicine started now that you and windy shores started at a low dose. That has calmed my concerns a lot so I am going to start with 2 clicks. I wonder if since I haven’t fractured yet if I can just increase by one per week. . . if the video is good I can use that to learn.

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@mmodestti

I was too. I started out at 3 clicks, mostly because I was scared of side effects, and because @windyshores was super helpful in these chats explaining how we could start at a lower dose and work our way to a therapeutic dose. I discussed it with my endocrinologist, who said she didn't have a problem with that as long as I reached a therapeutic dose as soon as possible.
So I went up a click every 3-4 days. Everything was beautiful until I reached 6 clicks, where I started to feel nauseous, and tired, and had some palpitations. But it really was very tolerable and I took it as a sign that I was reaching my therapeutic dose. I tried 7, but I definitely wasn't ready, so Y skipped a day, went down to 5, and worked my way back to 6. I have been at 6 for a couple of weeks and the effects have diminished notably (still a little nauseous, a couple of hip or lower back pain here and there, but very tolerable.

If you go to http://www.tymlos.com, they have a great video on how to prep the pen for the first time and how to use it. I only used that video and found it was a lot easier to get used to than I would have thought. I have read a few studies about results and am very grateful to have found this alternative. I have suffered 8 vertebral fractures (5 lumbar and 3 thoracic) and two rib fractures. That is way worse than any side effect.
I prepared a table where I track my dosing and side effects to discuss with my doctor. Here is a screenshot if you might find it useful. I have duplicated it and have a new tab for each pen.

I wish you success with your treatment.

Jump to this post

Thank you- is moderate activity like slow walking stair climber ? I do that every day now for twenty minutes.

REPLY
@mmodestti

I was too. I started out at 3 clicks, mostly because I was scared of side effects, and because @windyshores was super helpful in these chats explaining how we could start at a lower dose and work our way to a therapeutic dose. I discussed it with my endocrinologist, who said she didn't have a problem with that as long as I reached a therapeutic dose as soon as possible.
So I went up a click every 3-4 days. Everything was beautiful until I reached 6 clicks, where I started to feel nauseous, and tired, and had some palpitations. But it really was very tolerable and I took it as a sign that I was reaching my therapeutic dose. I tried 7, but I definitely wasn't ready, so Y skipped a day, went down to 5, and worked my way back to 6. I have been at 6 for a couple of weeks and the effects have diminished notably (still a little nauseous, a couple of hip or lower back pain here and there, but very tolerable.

If you go to http://www.tymlos.com, they have a great video on how to prep the pen for the first time and how to use it. I only used that video and found it was a lot easier to get used to than I would have thought. I have read a few studies about results and am very grateful to have found this alternative. I have suffered 8 vertebral fractures (5 lumbar and 3 thoracic) and two rib fractures. That is way worse than any side effect.
I prepared a table where I track my dosing and side effects to discuss with my doctor. Here is a screenshot if you might find it useful. I have duplicated it and have a new tab for each pen.

I wish you success with your treatment.

Jump to this post

You are making me feel good bc my Numbers are so severe and this medicine is better for me than other options bc we can customize the dose to our needs. May I ask you to send me a copy of your spreadsheet.

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@cloud60

You are making me feel good bc my Numbers are so severe and this medicine is better for me than other options bc we can customize the dose to our needs. May I ask you to send me a copy of your spreadsheet.

Jump to this post

@cloud60 you can customize to what is effective, but it should be at least 6 or 7 clicks out of 8, and that also depends on things like your size. Your doc can test effectiveness. The goal should be full dose. If you cannot tolerate that then a click or two of the pen below 8 is better than nothing and for me, worked well. I am very small though. Ramping up addresses anxiety and also gives the body a chance to get used to the hormone, but the goal remains what is considered a therapeutic dose. I would not waste too much time ramping up. Go by how you feel, but try to tolerate some level of side effect because they tend to ease up.

REPLY
@mmodestti

Thank you @windyshores !
You’ve been a real live saver in this process. Thank you for shedding so much light.
Symptoms have been very variable for me too.
For some reason, they seem to improve with mild to moderate physical activity, but worsen if I overdo it. So even on those days when I feel zero energy, I try not to stay in bed or the couch all day, but I take it really easy.
Whatever works.

Jump to this post

Omigosh @mmodestti you raise an excellent point. I had worse side effects when I took Tymlos at night: woke up with a headache and also my heart is more vulnerable at night.

I switched to morning and stayed in bed after the shot. This really worsened side effects, in hindsight. I started getting up and going out, doing my normal activities, including a nice walk, seeing my elderly mother, shopping, seeing friends, art class, and side effects were so much better! So glad you found that to be true.

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I've been on Tymlos for nearly a year and still have side effects (nausea, headache) almost immediately after I inject. However, the side effects are passing much more quickly than they used to. I feel better after 1 or 2 hours now. In the past, I'd be queasy & headachy for an entire evening. Am told the results will be worth the discomfort, and am hoping that will be the case.

REPLY
@windyshores

@cloud60 you can customize to what is effective, but it should be at least 6 or 7 clicks out of 8, and that also depends on things like your size. Your doc can test effectiveness. The goal should be full dose. If you cannot tolerate that then a click or two of the pen below 8 is better than nothing and for me, worked well. I am very small though. Ramping up addresses anxiety and also gives the body a chance to get used to the hormone, but the goal remains what is considered a therapeutic dose. I would not waste too much time ramping up. Go by how you feel, but try to tolerate some level of side effect because they tend to ease up.

Jump to this post

I am very small too, 5’3 and about 110 lbs

REPLY
@windyshores

@cloud60 you can customize to what is effective, but it should be at least 6 or 7 clicks out of 8, and that also depends on things like your size. Your doc can test effectiveness. The goal should be full dose. If you cannot tolerate that then a click or two of the pen below 8 is better than nothing and for me, worked well. I am very small though. Ramping up addresses anxiety and also gives the body a chance to get used to the hormone, but the goal remains what is considered a therapeutic dose. I would not waste too much time ramping up. Go by how you feel, but try to tolerate some level of side effect because they tend to ease up.

Jump to this post

Spent all day on Tymlos both learning shots and finances
Turns out I am in their savings program which gives me $7500 per calendar
year not lifetime. So I think the person who told me last week on Tymlos
was wrong. At any rate
So this year I will use $4400 of that and start over next year.

REPLY
@windyshores

@cloud60 you can customize to what is effective, but it should be at least 6 or 7 clicks out of 8, and that also depends on things like your size. Your doc can test effectiveness. The goal should be full dose. If you cannot tolerate that then a click or two of the pen below 8 is better than nothing and for me, worked well. I am very small though. Ramping up addresses anxiety and also gives the body a chance to get used to the hormone, but the goal remains what is considered a therapeutic dose. I would not waste too much time ramping up. Go by how you feel, but try to tolerate some level of side effect because they tend to ease up.

Jump to this post

I think tomorrow I will do3 clicks

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