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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@mmodestti

Sure!
I am not sure if we can share contact information here. Tomorrow, I’ll make a blank spreadsheet and try to upload it here. Maybe you can download it from here.
If not, and we can share email addresses, I’ll be happy to send you the sheet via email.

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Check your private messages I will send you mine

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@cloud60 I am not sure that the Tymlos dose is customizable. We don't know for sure what the therapeutic dose is for each individual. Studies have only been done with the full 8 clicks/80mcg. We don't know what factors affect therapeutic dose either, such as body size.

The goal is the full 8 clicks, which is what our docs prescribe and what has been studied. Ramping up is intended to reach that goal. Starting low helps with anxiety about side effects and lets the body get used to the drug, but it should be done as quickly as possible, which is different for each person. For me it took a month to get to 6 clicks but someone else might do it in 4 days.

I would expect side effects from any therapeutic dose. In fact I view the presence of some side effects as proof the drug is working. That may be wrong but is how I felt. That said, many side effects are short-lived (lasting an hour or two) and many ease up as the body adjusts. So you have to stick with it.

It is true that some of us truly cannot tolerate 80mcg no matter how hard we try. In that case, 7 clicks or even 6 is definitely of value and I had excellent gains. But the goal should still be 8 clicks if at all possible. There will be side effects on some days no matter which level you end up with but it is a small price to pay for safer bone density.

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@windyshores

@cloud60 I am not sure that the Tymlos dose is customizable. We don't know for sure what the therapeutic dose is for each individual. Studies have only been done with the full 8 clicks/80mcg. We don't know what factors affect therapeutic dose either, such as body size.

The goal is the full 8 clicks, which is what our docs prescribe and what has been studied. Ramping up is intended to reach that goal. Starting low helps with anxiety about side effects and lets the body get used to the drug, but it should be done as quickly as possible, which is different for each person. For me it took a month to get to 6 clicks but someone else might do it in 4 days.

I would expect side effects from any therapeutic dose. In fact I view the presence of some side effects as proof the drug is working. That may be wrong but is how I felt. That said, many side effects are short-lived (lasting an hour or two) and many ease up as the body adjusts. So you have to stick with it.

It is true that some of us truly cannot tolerate 80mcg no matter how hard we try. In that case, 7 clicks or even 6 is definitely of value and I had excellent gains. But the goal should still be 8 clicks if at all possible. There will be side effects on some days no matter which level you end up with but it is a small price to pay for safer bone density.

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Yes I agree with all of this I meant the fact you can adjust the dose to me is customizable from the patient’s end and it’s a real shame that millions of women will drop out of this medication after the first 80mcg bc of severe side effects. I want to have success on this and being able to adjust the dose according to how I am doing is best for me.
Example Evenity at monthly cannot be adjusted in dose at least according to what my doctor would do I think.
But true the doctor is not customizing doses even though yours is like with your future Reclast but mine isn’t according to what I know so far and I certainly didn’t know about adjusting clicks when I signed up for Tymlos which would have made it even more desirable for me. I wish you could tell the public or your doctor could tell the public about ramping up. The world doesn’t know.
How many days did you stay on 4 clicks and 5 clicks and 6?

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@cloud60

Yes I agree with all of this I meant the fact you can adjust the dose to me is customizable from the patient’s end and it’s a real shame that millions of women will drop out of this medication after the first 80mcg bc of severe side effects. I want to have success on this and being able to adjust the dose according to how I am doing is best for me.
Example Evenity at monthly cannot be adjusted in dose at least according to what my doctor would do I think.
But true the doctor is not customizing doses even though yours is like with your future Reclast but mine isn’t according to what I know so far and I certainly didn’t know about adjusting clicks when I signed up for Tymlos which would have made it even more desirable for me. I wish you could tell the public or your doctor could tell the public about ramping up. The world doesn’t know.
How many days did you stay on 4 clicks and 5 clicks and 6?

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I agree completely! If I did not need it so so badly I would have quit after doing that first full dose.

I don't remember the details of my ramping up but it tok 3-4 weeks to get to 6. But remember I am so sensitive that a full dose landed me in the ICU. You may be able to do things more quickly, or you may need to do things slowly.

I just want to emphasize that tolerability is different from no side effects. Tymlos does have side effects for many ( not all). I still have side effects at 6 or 7 but I can tolerate them and they go away quickly. But I cannot tolerate 8. You may do fine on 8!

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@cloud60
I have an empty copy of the spreadsheet. I tried to put it here so that you could download it to your computer, but it is in Excel format, and the page will not let me upload it here. You can email me at: mmodestti@gmail.com, and I will gladly send it to you.
I put mine on Google Drive so I can access it from any desktop, laptop, tablet, or even from my phone. Or if you prefer, you can print it and fill it by hand.
It has three tabs, one for each pen. You can duplicate the last tab before filling it, and keep opening tabs for each pen. In the end, you will have tracked your whole treatment.
It helps if you are not sure if you took your shot or not, it helps to remember on which side you took it the day before, so you switch areas of your belly, and it helps if you share it with your doctor to monitor the dose and side effects. I hope you find it helpful.

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@mmodestti

@cloud60
I have an empty copy of the spreadsheet. I tried to put it here so that you could download it to your computer, but it is in Excel format, and the page will not let me upload it here. You can email me at: mmodestti@gmail.com, and I will gladly send it to you.
I put mine on Google Drive so I can access it from any desktop, laptop, tablet, or even from my phone. Or if you prefer, you can print it and fill it by hand.
It has three tabs, one for each pen. You can duplicate the last tab before filling it, and keep opening tabs for each pen. In the end, you will have tracked your whole treatment.
It helps if you are not sure if you took your shot or not, it helps to remember on which side you took it the day before, so you switch areas of your belly, and it helps if you share it with your doctor to monitor the dose and side effects. I hope you find it helpful.

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Are you supposed to stay sitting up after the shot?

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I read somewhere that you should sit for a while because some people might experience lightheadedness or a blood pressure drop after the shot. It has not been my experience, except maybe the day I tried the 7 clicks. I felt fast palpitations and lightheadedness, so I went to the family room couch and lay down with my feet slightly elevated for about 15 minutes, and felt fine afterward. Turns out my BP did drop, because when my son came home (about half an hour after I was feeling all right), and brought me the sphygmomanometer, it was 90/60.
I decided I had tried the 7 clicks too soon, so I skipped a day, went back to 5, and then started doing 6 clicks again. It never happened again.

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@windyshores

I agree completely! If I did not need it so so badly I would have quit after doing that first full dose.

I don't remember the details of my ramping up but it tok 3-4 weeks to get to 6. But remember I am so sensitive that a full dose landed me in the ICU. You may be able to do things more quickly, or you may need to do things slowly.

I just want to emphasize that tolerability is different from no side effects. Tymlos does have side effects for many ( not all). I still have side effects at 6 or 7 but I can tolerate them and they go away quickly. But I cannot tolerate 8. You may do fine on 8!

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Since I am doing ok with 4 clicks what do you think of 4 clicks in the morning ( eventually) and 4 in evening. I know I would run out of needles but it’s an idea.

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@windyshores

I agree completely! If I did not need it so so badly I would have quit after doing that first full dose.

I don't remember the details of my ramping up but it tok 3-4 weeks to get to 6. But remember I am so sensitive that a full dose landed me in the ICU. You may be able to do things more quickly, or you may need to do things slowly.

I just want to emphasize that tolerability is different from no side effects. Tymlos does have side effects for many ( not all). I still have side effects at 6 or 7 but I can tolerate them and they go away quickly. But I cannot tolerate 8. You may do fine on 8!

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I got the headache again from 4 clicks at 9 pm tonight . I now do my medicine at night, and I think that’s why people do this at 11 pm to sleep through the side effects .

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No @cloud60 you cannot split the dose. The headache side effect went away for me, in a week or two. I only got it when I did it at night. When I switched to morning I didn't get the headache. Everyone is different.

This medicine has to be given all at once. The only exception according to my doc is if you do a second shot within a few minutes.

If it is really intolerable go back to 3 clicks. Better than quitting. But if you stay on 4 your body may adjust quickly. Your bones really need a good dose. Believe me, the headache you are having is not as bad as the pain and disability of fractures.

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