Any pre-injection tips for Tymlos?

Posted by esb13 @esb13, May 20 4:36pm

About to start Tymlos on Thursday. I know with Reclast a drink of water and 2 Tylenol before the infusion was helpful for absorption, side effects. Any similar pre injection tips from those who have been using Tymlos? Has anyone tried meclizine or another anti-vertigo drug to help with dizziness/nausea as body gets used to Tymlos?
Also - seeing here women talking about gaining weight and bloating on Tymlos - I haven't heard about this any where else. How bad is that? Being treated at a Boston Teaching Hospital and welcome this online community!

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

@babbsjoy

I will be starting Tymlos later this week, and am seeking any suggestions, tips, tricks that anyone would care to share. I am, of course, nervous! So far I think I have read: hydrate well before and eat something a bit salty, watch D3, consider taking it at night so as to sleep through side effects, take at a time I can lay down if necessary after, and the wonderful windy shores method of stepping up the dose if I can’t tolerate the full dose! Oh! And ultra fine needles if the ones I receive initially don’t suite….Anything else? Thanks!

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Hello @babbsjoy,

This is a great question and discussion to help yourself and others share tips on how to get prepared for starting a new medication or facing a procedure. I combined your discussion and the replies with an existing discussion on the same topic titled, "Any pre-injection tips for Tymlos?" - https://connect.mayoclinic.org/discussion/any-pre-injection-tips-for-tymlos/ so that everyone who has shared their experiences could meet in the same place.

@babbysjoy, if you are comfortable, what in particular has you the most nervous? Have some of the suggestions helped ease some of your nerves?

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@babbsjoy

I will be starting Tymlos later this week, and am seeking any suggestions, tips, tricks that anyone would care to share. I am, of course, nervous! So far I think I have read: hydrate well before and eat something a bit salty, watch D3, consider taking it at night so as to sleep through side effects, take at a time I can lay down if necessary after, and the wonderful windy shores method of stepping up the dose if I can’t tolerate the full dose! Oh! And ultra fine needles if the ones I receive initially don’t suite….Anything else? Thanks!

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@babbsjoy Tymlos has proven, at least for me to be the key to growing bone over the past 2 years. In total I had a 14% gain in my spine…about 1% in my hip. I wish I could have stayed on it longer, but it appears after about 18 months, the gains are pretty minimal and it had only been approved for year period.
I had very few side effects, mainly in the beginning but switching from morning to bedtime injections helped a lot. Throughout the 2 years I would have periodic bouts of ankle discomfort and noticed my tummy pooching a bit more than normal. The ankle pain stopped once I finished my 2-years.
Now I’m deciding what’s next. I’m guessing it’s going to be Evenity. I’m holding off a bit but don’t want to wait too long.
I did all 8 clicks with my injection pen from the beginning but many woman start with a lower dose and build up. I’m really happy I went the Tymlos way.

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@dooshie

@babbsjoy Tymlos has proven, at least for me to be the key to growing bone over the past 2 years. In total I had a 14% gain in my spine…about 1% in my hip. I wish I could have stayed on it longer, but it appears after about 18 months, the gains are pretty minimal and it had only been approved for year period.
I had very few side effects, mainly in the beginning but switching from morning to bedtime injections helped a lot. Throughout the 2 years I would have periodic bouts of ankle discomfort and noticed my tummy pooching a bit more than normal. The ankle pain stopped once I finished my 2-years.
Now I’m deciding what’s next. I’m guessing it’s going to be Evenity. I’m holding off a bit but don’t want to wait too long.
I did all 8 clicks with my injection pen from the beginning but many woman start with a lower dose and build up. I’m really happy I went the Tymlos way.

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@babbsjoy…meant to say in my last post that I was only approved to take Tymlos for 2 years. By the way, to make the injections easy, I pinched my skin, inserted the needle and then let go as I was injecting. Pretty simple. I’m very thankful I made the decision to take Tymlos…I pray you will be too. Rose 🌹

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@JustinMcClanahan

Hello @babbsjoy,

This is a great question and discussion to help yourself and others share tips on how to get prepared for starting a new medication or facing a procedure. I combined your discussion and the replies with an existing discussion on the same topic titled, "Any pre-injection tips for Tymlos?" - https://connect.mayoclinic.org/discussion/any-pre-injection-tips-for-tymlos/ so that everyone who has shared their experiences could meet in the same place.

@babbysjoy, if you are comfortable, what in particular has you the most nervous? Have some of the suggestions helped ease some of your nerves?

Jump to this post

@JustinMcClanahan
Thank you! I am both grateful/optimistic about having the opportunity to start Tymlos, and at the same time anxious/apprehensive. I have been blessed to not have to take many meds for anything in my life (at this time I am only on one and that just for the last year—unrelated to osteoporosis ). I don’t take that for granted, believe me. So the idea of daily self injections with possible side effects is scary. The idea of the actual shot and if I will do it right, the idea of gaining weight in my ab area that I can’t afford to gain, the idea of side effects especially vertigo and dizziness, and the idea of having to take even more med of another type after the Tymlos—all bother me. But not as much as the real possibility of fracture as so many have so graciously shared here about how challenging that can be! Their words of caution embolden me and make me want to face this head on and do what I can.

The kindness of so many courageous, generous women sharing their encouragement and advice from their experiences here have made me feel immeasurably better. I’ll put on my big girl panties and do what needs to be done when the med finally arrives this week! Thank you!

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@dooshie

@babbsjoy Tymlos has proven, at least for me to be the key to growing bone over the past 2 years. In total I had a 14% gain in my spine…about 1% in my hip. I wish I could have stayed on it longer, but it appears after about 18 months, the gains are pretty minimal and it had only been approved for year period.
I had very few side effects, mainly in the beginning but switching from morning to bedtime injections helped a lot. Throughout the 2 years I would have periodic bouts of ankle discomfort and noticed my tummy pooching a bit more than normal. The ankle pain stopped once I finished my 2-years.
Now I’m deciding what’s next. I’m guessing it’s going to be Evenity. I’m holding off a bit but don’t want to wait too long.
I did all 8 clicks with my injection pen from the beginning but many woman start with a lower dose and build up. I’m really happy I went the Tymlos way.

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@dooshie
Congrats on your great results from Tymlos! And I wish you every blessing with whatever you choose next….

I am very encouraged to hear about your Tymlos experience . It makes me feel much better! Thank you so much for taking the time to share.

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@babbsjoy

@dooshie
Congrats on your great results from Tymlos! And I wish you every blessing with whatever you choose next….

I am very encouraged to hear about your Tymlos experience . It makes me feel much better! Thank you so much for taking the time to share.

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It’s quite a journey for all of us affected by osteoporosis, but it’s a blessing we have options to build new bone. I pray you will find Tymlos to be a positive experience for you. Feel free to ask questions on this site…we are all here to support one another. 🌹 Rose

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To everyone that has joined this thread I began in May - Thank you all so much!
I am about to finish my third month so I do not have any P1NP data to share yet but I wanted to say it is great to have this incredible community. I do not have any pre-injection advice and I am one of the very lucky ones that has no side effects from TYMLOS. Nothing. Ever the worrier, I called the company nurse line and asked if this was a sign the medicine wasn't working. She said there was no data to support this correlation, but there are a percentage of people who have no benefit from the medicine. I hadn't really processed that when I started but it makes sense. There is no panacea for any condition. Has anyone out there not had benefit from TYMLOS? I am just hoping for 10% improvement in spine to get me out of OP range. I guess I will learn more soon enough. One thing I will pass on is to be sure to have your Vitamin D level checked often. The ideal range is 30-50. Mine was 50 in May, so I stopped the 2000 IU daily supplement and retested in August and it had dropped to 29. I learned I am someone despite summer sun, will always need a supplement. I will now get D checked every 3 months to be sure I keep optimal levels. **It's important to know your body and what you need and then advocate for that to your medical team** I will share P1NP (August) and DEXA (September). Wishing everyone good health!

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@esb13

To everyone that has joined this thread I began in May - Thank you all so much!
I am about to finish my third month so I do not have any P1NP data to share yet but I wanted to say it is great to have this incredible community. I do not have any pre-injection advice and I am one of the very lucky ones that has no side effects from TYMLOS. Nothing. Ever the worrier, I called the company nurse line and asked if this was a sign the medicine wasn't working. She said there was no data to support this correlation, but there are a percentage of people who have no benefit from the medicine. I hadn't really processed that when I started but it makes sense. There is no panacea for any condition. Has anyone out there not had benefit from TYMLOS? I am just hoping for 10% improvement in spine to get me out of OP range. I guess I will learn more soon enough. One thing I will pass on is to be sure to have your Vitamin D level checked often. The ideal range is 30-50. Mine was 50 in May, so I stopped the 2000 IU daily supplement and retested in August and it had dropped to 29. I learned I am someone despite summer sun, will always need a supplement. I will now get D checked every 3 months to be sure I keep optimal levels. **It's important to know your body and what you need and then advocate for that to your medical team** I will share P1NP (August) and DEXA (September). Wishing everyone good health!

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@esb13 hope to hear Tymlos is working well for you.

Just wanted to mention that I once read that Tymlos "eats D3." My level was 52 before starting. I actually went up to 3,000 units/day during Tymlos and my level stayed essentially the same . I basically tripled my intake.

When I stopped Tymlos, that level of D3 was causing my level to rise so I went back down.

Main message: I learned that I needed more D3 while on Tymlos!

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@windyshores

@esb13 hope to hear Tymlos is working well for you.

Just wanted to mention that I once read that Tymlos "eats D3." My level was 52 before starting. I actually went up to 3,000 units/day during Tymlos and my level stayed essentially the same . I basically tripled my intake.

When I stopped Tymlos, that level of D3 was causing my level to rise so I went back down.

Main message: I learned that I needed more D3 while on Tymlos!

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WOW! That makes much so much sense - my level of 50 was from the week before I started treatment! Thank you so much for passing this important Vitamin D information along. It seems this would be one of the first things TYMLOS users should be told. I will continue to take 3000-5000 IU to be sure to keep my D in range.
I cannot thank you and everyone enough!

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@windyshores

@esb13 hope to hear Tymlos is working well for you.

Just wanted to mention that I once read that Tymlos "eats D3." My level was 52 before starting. I actually went up to 3,000 units/day during Tymlos and my level stayed essentially the same . I basically tripled my intake.

When I stopped Tymlos, that level of D3 was causing my level to rise so I went back down.

Main message: I learned that I needed more D3 while on Tymlos!

Jump to this post

@windyshores
Did you continue to supplement calcium as well, while on Tymlos? If so, how did you time it in relationship to when you took the Tymlos?

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