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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In my experience, it does get better over time. Have you tried reducing the dose? You could go down to 6 "clicks" on the pen and when the side effects ease, go up to 7. I had excellent gains on these partial doses, but one caveat is that I am small. Still, if your side effects are so intense, you could try reducing and ramping back up. As always, make sure to tell your doc you want to do this.

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Thanks….I’m hanging with it

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@windyshores

In my experience, it does get better over time. Have you tried reducing the dose? You could go down to 6 "clicks" on the pen and when the side effects ease, go up to 7. I had excellent gains on these partial doses, but one caveat is that I am small. Still, if your side effects are so intense, you could try reducing and ramping back up. As always, make sure to tell your doc you want to do this.

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I am starting Tymlos on Tuesday / may I speak to you in a few days on the phone about how to use the pen ? Or do you think I should start with a lower dose?

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I am starting Tymlos on Tuesday and concerned about the side effects.

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@cloud60

I am starting Tymlos on Tuesday / may I speak to you in a few days on the phone about how to use the pen ? Or do you think I should start with a lower dose?

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@cloud60 if you are nervous it does no harm to start with two clicks, then three, then four and try to get to 6 or 7 at least. I am small so check with your doc on the therapeutic dose (or a pharmacist). My doc was very happy with 6 out of 8, but I got to 7. I rarely did the full dose but still had incredible results.

You prime the pen first. Flick it with your fingers to get air bubbles to the top and set it at 8 clicks and shoot it in the air.

After that you set the dose by turning it whatever number of clicks you want. You can also do two clicks and if you feel nothing, do one or two more a few minutes later (suggested by my doc).

When you inject, two inches from belly button, pinch up the skin a little then let go as you push the green button to release the medication. You will be fine!

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@windyshores

@cloud60 if you are nervous it does no harm to start with two clicks, then three, then four and try to get to 6 or 7 at least. I am small so check with your doc on the therapeutic dose (or a pharmacist). My doc was very happy with 6 out of 8, but I got to 7. I rarely did the full dose but still had incredible results.

You prime the pen first. Flick it with your fingers to get air bubbles to the top and set it at 8 clicks and shoot it in the air.

After that you set the dose by turning it whatever number of clicks you want. You can also do two clicks and if you feel nothing, do one or two more a few minutes later (suggested by my doc).

When you inject, two inches from belly button, pinch up the skin a little then let go as you push the green button to release the medication. You will be fine!

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Do you have to take any specific meds when you finish Tymlos?

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@trathfon62

Do you have to take any specific meds when you finish Tymlos?

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Yes you need to "lock in" the gains, usually with Reclast or alendronate. If you do Reclast then you may be able to take a med break with monitoring. I am also looking into a brief course of Evenity before the Reclast.

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@cloud60

I am starting Tymlos on Tuesday and concerned about the side effects.

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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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Maybe 6 clicks is a therapeutic dose for some. There seems to be a one-size-fits- all attitude yet we are indiviuls. The optimum dose for a 150 lb heavy boned person might be different than the optimum dose for a 100 pound fine-boned person. One has a lot more bone.

Several years ago, one of my dogs was on medication for her complex partial seizures (running seizures). She took less than the "therapeutic" dose but her seizures were controlled with less damage to her organs. I kept her on the minimum dose needed in spite of Vet's recommendations.

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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.

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@mmodestti great post and exactly what I did. Backing off if side effects are hard and then working back up. My only comment is that I have found side effects vary from day to day. At 7 clicks I might still get some fatigue, or dizziness some days but I do stick with it most of the time. Headache as a side effect went away quite quickly. So sticking with a dose even if it has side effects can sometimes mean those side effects go away.

We have a similar fracture history and similar commitment. I would take a few days a month of nausea to avoid any fractures given the pain and disability that results. But Tymlos really has been very tolerable. So grateful.

That chart is great!

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