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Anyone unsure of their Tymlos side effects?

Posted by vansks @vansks, Feb 17, 2024

I'm starting my 3rd month of Tymlos. Right off the bat I was waking up with a mild headache that comes and goes all day. It's not horrible and I really want better bones so I'm ignoring it, I did report it. I am also more tired than usual, could it be from the headache, old age, Tymlos? How do we know? A few days ago I started getting an aching pain in my left calf, sometimes it runs from my hip to my foot. Anyone else have leg pain? It's not a cramp, it's a solid pain. Might be a long 2 years (sigh)!

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drsuefowler | @drsuefowler | Feb 23, 2024
In reply to @windyshores "I have tinnitus from loss of hearing (slight loss, loud ringing). I am concerned for you..." + (show)
Profile picture for windyshores @windyshores

I have tinnitus from loss of hearing (slight loss, loud ringing). I am concerned for you that such a low dose of Tymlos is not doing anything. That is a lot of calcium. Do you split it over the day? My level was 10.3 and I did not have those symptoms. I took 3,000 units of D3 while on Tymlos. Is your D level okay?

Do you think the dizziness and ear ringing are related and there is something going on that is not related to Tymlos? At two clicks it seems strange you would have such strong side effects.

If you can't get to at least 4 clicks, maybe your doc will switch you. I hope you are refrigerating the pen!

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The ringing started at 3 clicks. I divide my calcium between lunch and dinner. I take a thyroid med in the AM so can't take minerals then. I take 2000 IU of Vitamin D at dinner. I am refrigerating my pen. Thanks for your response and all your helpful suggestions.

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lynnsusan | @lynnsusan | 3 days ago
In reply to @windyshores "@vansks I got a 20% gain from 60mcg and then for the last year, mostly 70..." + (show)
Profile picture for windyshores @windyshores

@vansks I got a 20% gain from 60mcg and then for the last year, mostly 70 mcg (I varied it depending on what I was doing that day but aimed for the highest I could tolerate).

I believe my body got used to it over time so tolerability increased. That may happen for you if you continue but if I were you I would try 60mcg (6 clicks) or even 40mcg and work up to 7 or 8 clicks. It helped me. I can't promise it will help you but it seems to be useful for a lot of us. But refrigerate the pen to last longer than 30 days!

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@windyshores If you had tiredness did that get better over time? How long ? I started Tymlos yesterday ( 8pm) and got a bad headache . i still have the headache today along with tiredness. Hard to do my workout..Ugh!

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hlp123 | @hlp123 | 2 days ago

I would like to start Tymlos and I have asked my endocrinologist about starting with a low dose and she says that she does not know anything about a low dose and will not advise this. I usually have a really strong reaction to medications, but I really need to start a bone strengthening medication, but I am very fearful about the full dose of Tymlos. I'm not looking for trouble but I took a year of Prolia and the side effects were severe. I got through a year of Reclast, but every one says that does not build bone, and my bones are in terrible shape. My ribs fracture at least once a year without impact. Any advise would help me. Thank you.

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lightlifts | @lightlifts | 2 days ago
In reply to @hlp123 "I would like to start Tymlos and I have asked my endocrinologist about starting with a..." + (show)
Profile picture for hlp123 @hlp123

I would like to start Tymlos and I have asked my endocrinologist about starting with a low dose and she says that she does not know anything about a low dose and will not advise this. I usually have a really strong reaction to medications, but I really need to start a bone strengthening medication, but I am very fearful about the full dose of Tymlos. I'm not looking for trouble but I took a year of Prolia and the side effects were severe. I got through a year of Reclast, but every one says that does not build bone, and my bones are in terrible shape. My ribs fracture at least once a year without impact. Any advise would help me. Thank you.

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@hlp123 start at 4 clicks on the pen and each week add another click. At 10 months I am on 7 clicks.
At the beginning I'm went right to the full dose and felt exhausted all day so I backed down and gradually ramped up. My MD was in agreement. My DEXA is in August so will know more then. I have read several people on this site who have gains on less than the full 8 clicks. Good luck to all of us!

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