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.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@jmla

@windyshores
Update: I started my second pen this week and went up from 40 to 50mcg. I felt fine and let my doctor know that I had bumped it up a bit. He told me to continue at 50 and try 60 in two weeks. I’m very glad to have increased my dose. Thanks for the encouragement. I hope I see the same gains as you’ve had, although my spine bmd is lower than yours was. Depending on how long my body continues to respond to Tymlos, my doctor has suggested that he may keep me on it beyond 2 years. I very much hope my first blood test shows that it’s working at all. Fingers crossed!

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@jmla yay! My spine was -3.6 and femur neck -4.1. But I have 7 spinal fractures, three from trauma in 2006 and the rest osteoporotic.

Blood tests after 18 months seemed to show my Tymlos was no longer doing much but docs kept me on for 26 months while we figured out what to do next, while I recovered from COVID and so on and docs said it was at least maintaining me. I wish I could just stay on it! If I cannot tolerate Evenity I might ask! Forteo is now approved for more than 2 years.... Good luck with your doses!!

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Thanks. Mine was about the same (spine). So far I have osteopenia in my total hip and femoral neck (and wrists). Hoping to keep it that way. If Tymlos stops working for me, I’ll probably stop and then go back on it at some point later. I feel the same as you. I’d like to just take it for ever. Or at least on and off for as long as possible. Perhaps research will allow that some day. I’m grateful this is available at all. Good luck. Please keep us posted on what’s next for you.

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@jmla

Thanks. Mine was about the same (spine). So far I have osteopenia in my total hip and femoral neck (and wrists). Hoping to keep it that way. If Tymlos stops working for me, I’ll probably stop and then go back on it at some point later. I feel the same as you. I’d like to just take it for ever. Or at least on and off for as long as possible. Perhaps research will allow that some day. I’m grateful this is available at all. Good luck. Please keep us posted on what’s next for you.

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Evenity tomorrow! Nervous. I might do 4 months and then 20% Reclast to see if I can tolerate. I'll post about how things go!

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@windyshores

Evenity tomorrow! Nervous. I might do 4 months and then 20% Reclast to see if I can tolerate. I'll post about how things go!

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Best wishes to you. I hope evenity is well tolerated for you Windyshores.

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I did it! I was having some heart issues last night- very brief tachycardia and maybe afib- so was extra nervous.

I had a "reaction" (not a side effect) with pretty strong pressure on my chest and wooziness. This has happened before. I am probably sensitive to the polysorbate 20 in the injections. I had the injections in my tummy.

After an hour or so I am fine. Happy I did it! I made an appointment for late January and early March. Onward!

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@windyshores

I did it! I was having some heart issues last night- very brief tachycardia and maybe afib- so was extra nervous.

I had a "reaction" (not a side effect) with pretty strong pressure on my chest and wooziness. This has happened before. I am probably sensitive to the polysorbate 20 in the injections. I had the injections in my tummy.

After an hour or so I am fine. Happy I did it! I made an appointment for late January and early March. Onward!

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Windyshores,
that is great! Hope you have further success with the Evenity. I just did my 5th injection and so far all is good.

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@windyshores

I did it! I was having some heart issues last night- very brief tachycardia and maybe afib- so was extra nervous.

I had a "reaction" (not a side effect) with pretty strong pressure on my chest and wooziness. This has happened before. I am probably sensitive to the polysorbate 20 in the injections. I had the injections in my tummy.

After an hour or so I am fine. Happy I did it! I made an appointment for late January and early March. Onward!

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best to you windyshores. you’ve been so helpful to me. I completed 12 evenity in November without issue and now have completed 2 full months of weekly alendronate which I did not think I would tolerate at all. I just take it early on Friday mornings and wait about 45
minutes for my regular breakfast. I stay upright and kind of dance around to get it down and so far no real problems. I was so sure i was going to have GI issues and I haven’t yet. I like that I can stop it if I want. I’m hoping to have a CTX in Mid January and then have a talk with endo. I do t want to take it more than a year. May even pull my whole story together and
consult with Dr McCormick

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Just to be clear:

"I did it! I was having some heart issues last night- very brief tachycardia and maybe afib- so was extra nervous."

The tachycardia and afib happened the night BEFORE Evenity!!!!

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@windyshores

I did it! I was having some heart issues last night- very brief tachycardia and maybe afib- so was extra nervous.

I had a "reaction" (not a side effect) with pretty strong pressure on my chest and wooziness. This has happened before. I am probably sensitive to the polysorbate 20 in the injections. I had the injections in my tummy.

After an hour or so I am fine. Happy I did it! I made an appointment for late January and early March. Onward!

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Thank goodness you feel better. You are a very strong woman. I bet it was scary for the first injection. I hope and pray all goes well and it works great for you.

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@windyshores

Evenity tomorrow! Nervous. I might do 4 months and then 20% Reclast to see if I can tolerate. I'll post about how things go!

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Good luck!!

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