Tymlos extreme side effects. PLEASE HELP

Posted by Brittlebones70 @peggybrabec, Feb 14 11:15am

I started tymlos 3 days ago. 8 clicks at bedtime. Dizziness/nausea/headache/extreme weakness immediately and continuing thru the next day. No sleep either.
Called my doctor this morning. He’s out til Wednesday. Called tymlos. They won’t even talk to me about what to do.
I’ll ask here. Should I adjust the dose down to 2 clicks for this evening injection or will it be bad if I just stop the injections all together until I discuss it with my doctor? I’m just 100# and always seem to have horrible side effects from any medication. I’m due to go to work tomorrow 8 am and I can’t not go but no way I can go to work with these side effects. Any suggestions here?
I’m just so distraught about this diagnosis and treatment options

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It's not going to hurt you to take a day off and just go to work so that you don't have to panic.

Then, I would try adjusting the dose down really low, like two clicks. If that works out OK, try three clicks the next day. Maybe there's a level you can live with. If you still have a problem, then stop and talk to the doctor.

Some people here have reported that they could never get up to the maximum dose, and just managed with fewer clicks. There is still a beneficial effect even at a lower dose.

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@peggybrabec Did you call your doctor’s office and speak with the receptionist who told you your doctor is out until next week? I suggest that if this is the case that you call again and ask who is filling in or on call for your doctor. In group practices medical providers fill in for one another and your questions about Tymlos seem urgent enough to consult whoever the doctor is who is on call.

Will you call your doctor’s office and ask those questions?

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Try calling the pharmacy that supplied the Tymlos and ask to speak to a pharmacist. I was on Tymlos for awhile and the specialty pharmacy that supplied it had a program where you could speak to a pharmacist and ask for advice.

I would stop until you speak to someone. This is a medication that takes months to work so stopping for a few days isn't going to be a problem.

I was on Tymlos for 4 months then had to switch to Forteo due to insurance issues. I was off Tymlos for 2.5 months in between. The doctor wasn't concerned about the delay.

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I'd definitely skip a day. Then I'd start at two clicks. Three clicks the subsequent two days. You could stay at three until Wednesday or advance another click per day, or so. Your body may adjust, but don't suffer with too many clicks.

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Not to jump on the bandwagon, but I think everything that others have said is good advice. Stopping after only three days - until you can get clarity from your doc or from the pharmacist - isn't going to set you back at all. Starting over at one or two clicks is a good idea but if you don't feel comfortable doing it until you talk to the doc or pharmacist, then don't stress yourself over it. I get my Tymlos from a specialty pharmacy and they have pretty knowledgeable nurses available in addition to the pharmacist; maybe your pharmacy does too? This is a long process and you have to feel confident that it's right for you.

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I have been on Tymlos for 4 months now and I find it’s better for me to inject in the morning and stay somewhat busy while my heartbeat speeds up for that little while. Trying to do it and then go to bed did NOT work for me. I started out at 2 clicks and worked my way up to full dose within a month or so, letting my body get used to the medication. I still hate it, the whole situation but I had 3 compression fractures in 2024 due to going off Prolia and then Boniva failing. This site has been a lifesaver for me!

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I am sorry you are experiencing such difficult side effects. I too had very intense effects when I started at 4 clicks! I am very sensitive and thin body type. I restarted at 1 click and moved up one click every week and half. With every move up, i had a day or two to adjust but it worked. It took almost three months to get to 8 clicks. I experienced intense heart palpitations for the first 6 months, and had to take coconut water every day ( 3 - 4 glasses). The ' click' changes did not help that side effect. I had to manage it with coconut water. I hope this helps. Please do not have fear overtake you. This is a serious condition to learn to manage and recover from. Please read Great Bones by DrK McCormick to get a solid foundation of how bone is effected by the physical system imbalances. Create a vision for your healing.

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@dmshope

I am sorry you are experiencing such difficult side effects. I too had very intense effects when I started at 4 clicks! I am very sensitive and thin body type. I restarted at 1 click and moved up one click every week and half. With every move up, i had a day or two to adjust but it worked. It took almost three months to get to 8 clicks. I experienced intense heart palpitations for the first 6 months, and had to take coconut water every day ( 3 - 4 glasses). The ' click' changes did not help that side effect. I had to manage it with coconut water. I hope this helps. Please do not have fear overtake you. This is a serious condition to learn to manage and recover from. Please read Great Bones by DrK McCormick to get a solid foundation of how bone is effected by the physical system imbalances. Create a vision for your healing.

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Would you please explain why coconut water would help with intense heart palpitations? Thanks so much.

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