Tymlos pro/cons

Posted by ldj1002 @ldj1002, Dec 22, 2023

I’m 57 with newly diagnosed borderline severe osteoporosis.
Dr is strongly recommending Tymlos.
I’ve Read up on some of side effects.
Is it best to take at night incase of headaches/ dizziness?
Thanks!

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@ymv

I’ve been on Tymlos since June. The 1st month I was on the full dose and had unmanageable headaches and low back pain. So, I dialed down to 6 clicks and worked my way back up to 8 clicks. I still have occasional low back pain. As stated the b/p drop, palpitations and headache occur very soon after the injection. I take the medication in the evening to better manage the side effects

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I’m thinking taking it at bedtime will be the best bet for me as well.
I have a physical job and an on my feet most of the day.
Don’t need to add headaches and make my back any worse .
Thanks for your input

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@ssapp1

I am using Tymlos and I do get the headache and dizziness after my shot, so I do the injection at night. The headache and dizziness last 30-60 minutes, so it really doesn’t bother me much.

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I’m worried about the headaches, but I suppose I should be more worried about breaking a bone.
I have low blood pressure normally so I guess I’ll have to try it and see.

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@windyshores

I started taking it at night, but switched to mornings. I was waking up with a headache. In the first months I would rest after the shot and even took my blood pressure before and after. But after awhile I found that side effects (which for me lasted maybe 2 hours) eased if I got up and out. I actually found it more tolerable by being active! Everyone is different and you can play around with it.

I ramped up the dose and mostly took 6-7 clicks worth versus the full 8 as I have written before. I had excellent gains. I would actually vary the dose depending on what I had to do that day: 6 clicks for a day with something important or onerous, and 7 the rest of the time. At the very end I did manage a full dose!

Tymlos was the ONLY med I could tolerate and I am so grateful. I am going to try Evenity a few times and then my doc will do a 20% Reclast test dose which I may stick with, due to my sensitivities. Good luck!

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Thank you for your input.
Fingers crossed it all goes well . 🤞🏼

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@ldj1002

I’m worried about the headaches, but I suppose I should be more worried about breaking a bone.
I have low blood pressure normally so I guess I’ll have to try it and see.

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Definitely need to worry about a fracture. The primary reason that doctors switched me from Prolia to Tymlos was because I had 2 spontaneous fractures, within the month of March, and both required surgery. I really felt that I didn’t have much choice as I was very scared and worried about subsequent fracture.

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If you take more TYMLOS than prescribed you may have symptoms such as muscle weakness, low energy, headache, nausea, dizziness (especially when getting up after sitting for a while), and a faster heartbeat.
ldj1002 I wanted to be sure you saw this evidence (?) that we are overprescribed in case you underclick

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@gently

You might ask your endo to use the prior dxa with the insurance. After their oversight or neglect. If your insurance won't approve you may be eligible for pharmaceutical company help. Usually all they require is a prescription. Will your endo still prescribe now that your numbers have improved. Your results are so good that I don't think it can be the strontium alone. I would maintain the quarter dose. It is interesting that your endo suspects it might not matter how much you take. If the 80 mcg only yields 36mcg bioavailability, maybe the other 44mcg only causes side effects. Best wishes. https://www.tymlos.com/hcp/resources/#:~:text=What%20to%20do%20if%20TYMLOS,who%20cannot%20afford%20their%20medication.

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Thanks so much @gently for your suggestions.

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I really wanted to get up to 7 or 8 clicks. I am feeling uncertain about 2 clicks but defer to docs that people have. I do think comparison with mcg in Forteo may not be valid because one is a synthetic hormone and one a synthetic protein. Maybe Tymlos is less direct, as I wrote before-??

@drsuefowler can you ask the radiologist to adjust for strontium? Do you take 680mg? That is the therapeutic dose and will definitely affect the DEXA as you know. Did your doc say it was okay to take both Tymlos and strontium? There is some info on combination therapies (McCormick and Leder's video) so I am curious.

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@windyshores

I really wanted to get up to 7 or 8 clicks. I am feeling uncertain about 2 clicks but defer to docs that people have. I do think comparison with mcg in Forteo may not be valid because one is a synthetic hormone and one a synthetic protein. Maybe Tymlos is less direct, as I wrote before-??

@drsuefowler can you ask the radiologist to adjust for strontium? Do you take 680mg? That is the therapeutic dose and will definitely affect the DEXA as you know. Did your doc say it was okay to take both Tymlos and strontium? There is some info on combination therapies (McCormick and Leder's video) so I am curious.

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@windyshores I am taking half a dose of Strontium now, but most of the last year I only took 300mg nightly. I didn't ask my endo about Stontium. The problem is he is so busy that there is a lack of communication. I write and call but don't get a response. I have had to stop by the office to talk to the nurse and that doesn't always work. I finally was able to get an appointment on January 18th. I need to look at McCormick and Leder's video. Thanks so much for your comments.

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@ymv

Definitely need to worry about a fracture. The primary reason that doctors switched me from Prolia to Tymlos was because I had 2 spontaneous fractures, within the month of March, and both required surgery. I really felt that I didn’t have much choice as I was very scared and worried about subsequent fracture.

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I’m sorry about that.
Hope you’re doing better now.

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@gently

If you take more TYMLOS than prescribed you may have symptoms such as muscle weakness, low energy, headache, nausea, dizziness (especially when getting up after sitting for a while), and a faster heartbeat.
ldj1002 I wanted to be sure you saw this evidence (?) that we are overprescribed in case you underclick

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Thank you.
I haven’t been prescribed yet. Doctor is waiting for me to give her the go ahead. Wanted to get a bit more info before I started.
Do they base the dose on weight?
I’m petite and thin.

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