Dosage Adjustments On Tymlos Pen

Posted by julieann9 @julieann9, Apr 16, 2023

I recently started using the Tymlos pen. I am on the beginning of
the second pen. I have been on the full dosage and the
side effects have been horrendous. I am 5 foot, 1 inch and
weigh 110 pounds. I asked my doc and the pharmacist at the
specialty pharmacy about starting at a lower dose. They both said
the pen only administers the full dose.
Now I am reading that people have adjusted the dose on the
Tymlos pen by using clicks. Can someone please explain to me
how to do this. Your help is much appreciated. Thanks.

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@mayblin

@jmla if you don’t mind, could you share some of the food that contains high calcium that you eat on a daily basis?

Also, have you and your doctor discussed what to do after tymlos? It seems a popular one is Reclast. If your doctor prefers a different one, do you mind sharing the reason behind his choice?

Thanks a lot!

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Hi @mayblin. I really like Kefir which has 390mg per serving. I also eat calcium fortified cereal, which has 200mg in a serving, so with milk it’s like 550-600mg just in my morning cereal. Sardines with the bones in has 200mg per can; calcium fortified orange juice has 375mg per serving (but a lot of sugar, so I drink 1/2). Plus dark green veggies, Greek yogurt, cheese (one stick of part skim string cheese has 150mg); even some breads have 50mg per slice. I love dairy so I do have an easy time getting my calcium, but I understand that not everyone can consume that much (or any) dairy.

I haven’t talked with my doctor about treatments yet. We will probably discuss the post-Tymlos strategy after my 3-month bloodwork comes back. I will ask about Evenity and Reclast.

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@windyshores

@jmla I have only done the full dose a few times in 2+ years. It is a mystery why I can tolerate (sometimes) 7 clicks but not 8! I eventually went back and forth between 6 and 7 depending on what I had to do on a certain day, but it took awhile to get there!

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@windyshores It’s funny, yesterday was the first time that I injected 40mcg and had no side effects. I was worried I’d done it wrong. That was at the two week mark, so I’m hopeful that I’m adjusting to it. If I can go a few more days or another week with no side effects, I’ll try clicking up to 50 and see how that goes.

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@jmla

@windyshores It’s funny, yesterday was the first time that I injected 40mcg and had no side effects. I was worried I’d done it wrong. That was at the two week mark, so I’m hopeful that I’m adjusting to it. If I can go a few more days or another week with no side effects, I’ll try clicking up to 50 and see how that goes.

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@jmla just want to emphasize that many days I DID have side effects but considered them tolerable. Especially in the context of fractures! I don't want to give the impression that ramping up got rid of side effects entirely or that I stopped going up on the dose when I had any side effects at all. It is strange, some days no side effects and some days more. Overall grateful to be able to take Tymlos! Good luck with whatever dose you end up with!

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@jmla

Hi @mayblin. I really like Kefir which has 390mg per serving. I also eat calcium fortified cereal, which has 200mg in a serving, so with milk it’s like 550-600mg just in my morning cereal. Sardines with the bones in has 200mg per can; calcium fortified orange juice has 375mg per serving (but a lot of sugar, so I drink 1/2). Plus dark green veggies, Greek yogurt, cheese (one stick of part skim string cheese has 150mg); even some breads have 50mg per slice. I love dairy so I do have an easy time getting my calcium, but I understand that not everyone can consume that much (or any) dairy.

I haven’t talked with my doctor about treatments yet. We will probably discuss the post-Tymlos strategy after my 3-month bloodwork comes back. I will ask about Evenity and Reclast.

Jump to this post

Thank you very much for your suggestions! Like you, I get calcium from food and had been heavily dependent on dairy. After discussing with my doctor, we both felt it may be a good idea to diversify a bit from food other than dairy. Unlike you, I can't have too much carbs due to my insulin resistence so fortified food may not be a good choice for me. Veggies, bone-in fish are good idea, thank you! These days I felt like I almost need a daily log to keep track calcium intake.

Keep us posted re: your doctor's choice of lock in agents, ask rational of his/her choice too. Best of luck to your treatment!

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I am so sorry you were given the wrong information. My Endo guy told me the same thing but through this forum I learned how the Tymlos dosing really works AND YOU CAN ADJUST THE DOSE! I have had no luck with any other meds. I started Tymlos with just1 click and after a few days moved up to two. Side effects were minimal and bearable. Since the beginning of Sept I have moved up to 7 clicks and can tolerate this dosage very well as long as I drink plenty of water throughout the day. Last week I upped it to 8 clicks expecting little or no reaction but WAS I WRONG! 8 clicks is just too much and the side effects, nausea, dizziness, body aches and feeling like I had the flu so didn't even want to getup in the morning, were awful!! So now I am back to7 clicks. One of our our co-commenters, "Windy Shores" has had good luck at 6 clicks and she always gives me great advice on this treatment. I hope she sees this and weighs in. Pat J

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@mspatart

I am so sorry you were given the wrong information. My Endo guy told me the same thing but through this forum I learned how the Tymlos dosing really works AND YOU CAN ADJUST THE DOSE! I have had no luck with any other meds. I started Tymlos with just1 click and after a few days moved up to two. Side effects were minimal and bearable. Since the beginning of Sept I have moved up to 7 clicks and can tolerate this dosage very well as long as I drink plenty of water throughout the day. Last week I upped it to 8 clicks expecting little or no reaction but WAS I WRONG! 8 clicks is just too much and the side effects, nausea, dizziness, body aches and feeling like I had the flu so didn't even want to getup in the morning, were awful!! So now I am back to7 clicks. One of our our co-commenters, "Windy Shores" has had good luck at 6 clicks and she always gives me great advice on this treatment. I hope she sees this and weighs in. Pat J

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@mspatart I got up to 7 clicks, and sometimes did 6, but had the same experience with 8 that you did, even after 18 months. It's strange that that difference of one click was so impactful.
My doc has told me that this idea of ramping up has changed his practice 🙂

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@windyshores

@jmla just want to emphasize that many days I DID have side effects but considered them tolerable. Especially in the context of fractures! I don't want to give the impression that ramping up got rid of side effects entirely or that I stopped going up on the dose when I had any side effects at all. It is strange, some days no side effects and some days more. Overall grateful to be able to take Tymlos! Good luck with whatever dose you end up with!

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I have found that if I don’t have any calcium with my meal, eat a whole meal, then take my Tymlos, I have no side effects.

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@mayblin

Thank you very much for your suggestions! Like you, I get calcium from food and had been heavily dependent on dairy. After discussing with my doctor, we both felt it may be a good idea to diversify a bit from food other than dairy. Unlike you, I can't have too much carbs due to my insulin resistence so fortified food may not be a good choice for me. Veggies, bone-in fish are good idea, thank you! These days I felt like I almost need a daily log to keep track calcium intake.

Keep us posted re: your doctor's choice of lock in agents, ask rational of his/her choice too. Best of luck to your treatment!

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I do have a calcium tracker! 🙂 I have a list that shows the food and the mg of calcium in various amounts. Same with protein.

I will definitely report back when I talk to my doctor about continuing treatments. He did say that if my body is still responding to Tymlos after two years, he may keep me on it for another year.

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@windyshores

@mspatart I got up to 7 clicks, and sometimes did 6, but had the same experience with 8 that you did, even after 18 months. It's strange that that difference of one click was so impactful.
My doc has told me that this idea of ramping up has changed his practice 🙂

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WOW, That is really interesting. I wonder why other companies have not come up with that method.?? It was so great to get your reply and I can't thank you enough for all your insight and encouragement. I think I may be able to finally make progress with Tymlos and it is such a relief. BUT YES, why should one more click be such a horrible change?? Makes little sense to me and I almost started thinking it was all in my head so I appreciate your input on that so much. I will try 8 again after the holidays when I'm not trying to get so many things done. Have a good holiday season yourself and again many thanks.

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@mspatart

WOW, That is really interesting. I wonder why other companies have not come up with that method.?? It was so great to get your reply and I can't thank you enough for all your insight and encouragement. I think I may be able to finally make progress with Tymlos and it is such a relief. BUT YES, why should one more click be such a horrible change?? Makes little sense to me and I almost started thinking it was all in my head so I appreciate your input on that so much. I will try 8 again after the holidays when I'm not trying to get so many things done. Have a good holiday season yourself and again many thanks.

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@mspatart I had excellent gains on 5 or 7 clicks so if * is still tough, don't worry. Towards the end of 18 months I did do 8 on days when I didn't have anything to do! Only a few times 🙂

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