Tymlos injections a week off?

Posted by 2024tymloshelp @2024tymloshelp, May 16 10:43pm

Does anyone have data on what happens if someone takes some days off from Tymlos injections? I am taking a trip for 8 days and would rather not bring my Tymlos pen.
However if this would ruin my treatment results (I am in month 9)
I guess I can buy a travel ice pack and bring it.
Just wondering how skipping a week affects results.

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I asked my endocrinologist something similar before a short trip — they said missing a few days (even up to a week) isn’t ideal but won’t drastically impact long-term results, especially if you're consistent otherwise. Still, keeping it cold and bringing it along might be worth it for peace of mind. Maybe check with your doctor to be sure based on your specific case.

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My understanding is that Tymlos is good for 30 days without refrigeration, unlike Forteo, which needs to be kept cold. So I am not sure you need to worry about bringing along an ice pack.

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When I called last month and asked my specialty pharmacy about traveling with Tymlos, I was told it can go seven days without refrigeration. That this was new guidance from the manufacturer.

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@daisylou

When I called last month and asked my specialty pharmacy about traveling with Tymlos, I was told it can go seven days without refrigeration. That this was new guidance from the manufacturer.

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Thanks -
Yes I was just wondering about extreme temperature swings during long flight etc. so I’ll have to bring a little cooler pack to keep it stable. Just wish I knew if skipping a week would impact my bone gains .
I’ll ask my doctor. Thanks

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You don’t have to keep it cold, just keep it in your purse or backpack on the plane, etc.

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Here's the direction sheet from the Tymlos webpage, which says that after first use, the pen has to be kept at room temperature (68 - 77 degrees):
https://www.tymlos.com/taking-tymlos/#

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Very helpful - that’s what I thought

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I can't answer your question but I was having side effects for a while and asked my endocrinologist about if the Tymlos was causing it. He told me that the only way to find out was to stop the drug for a week, and then to try going back every other day for a week before going back full throttle again. He didn't seem too concerned about a week off. So I went on a trip in April and also didn't want to deal with worrying about the temp fluctuations, so I was off the Tymlos for 8 days. I have no idea if it messed up any progress I may have had, but I will say that I had a lot more energy that week. I am on my 4th pen, and the fatigue I feel on this drug is getting me down. Not sure I can take another 20 months of this! Plus, I do not have the energy that I once had that could allow me to try to build my bones with exercise, weights, resistance bands , etc. What a conundrum this Osteo journey is.

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@mary1951

I can't answer your question but I was having side effects for a while and asked my endocrinologist about if the Tymlos was causing it. He told me that the only way to find out was to stop the drug for a week, and then to try going back every other day for a week before going back full throttle again. He didn't seem too concerned about a week off. So I went on a trip in April and also didn't want to deal with worrying about the temp fluctuations, so I was off the Tymlos for 8 days. I have no idea if it messed up any progress I may have had, but I will say that I had a lot more energy that week. I am on my 4th pen, and the fatigue I feel on this drug is getting me down. Not sure I can take another 20 months of this! Plus, I do not have the energy that I once had that could allow me to try to build my bones with exercise, weights, resistance bands , etc. What a conundrum this Osteo journey is.

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Several do lower doses to get bodies adjusted, When I went off couple weeks, my Dr said to begin back with two clicks for a week and gradually increase each week. Some on here weren’t able to sustain the full 8 clicks but still had good results. Might search on this site and you can find these discussions that might help you.

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Hi

I just started Tymolos yesterday on 4 clicks. I’m going to Ireland so I asked the same question. I was advised Tymolos is fine at temp of 77 degrees so taking it in your carry on is fine.
If you contact Tymolos, they will provide you with a free travel case. There is room in it for 7 needles, alcohol preps and the pen. I was told I can use an empty water bottle to place the needles or any hard plastic container with a cap. I was told the needles can be disposed of in most bathrooms as they have sharp containers.
I’m concerned about side effects as my body is very resistant to drugs. I cannot take oral drugs as I have gastrointestinal issues. I cannot tolerate calcium in any form except dairy but then has to be lactose free. I eat lots of salmon, tuna and red and green veggies but broccoli and cauliflower a no, no.
In 2020 I tried infusion but had 106 temp and awful body aches throughout my body for 10 days. I drank loads of water prior and was given 2 Extra strength Tylenol 1 hour prior to infusion.
Cannot remember what Dr called it but some kind of overheated response.
I tried weight training for several years as well as Osteostrong without much, if any, improvement.
This is my last hope. Praying my side effects will be tolerable.
I’ll be 78 and wish Estrogen was prescribed years ago post menopause. Unfortunately, at that time they believed it caused breast cancer so it was not an option.
I feel fine have some arthritis, neuropathy and gastrointestinal issues but overall in good health.
Praying this goes well.

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