Tymlos-Timing, travel and meds, Oh My!

Posted by ccps101 @ccps101, Jan 30 4:42pm

Am about to start Tymlos this weekend and first off wanted to thank the contributors to this board. Have read through many threads and all quite helpful! I have a few more questions:
1. Timing and other Meds:Y’all seem to be all over the place on timing, lol! Some are morning, some night, maybe 1-2 midday. I’m leaning toward morning. But my other Meds, big question. I am on long term low dose prednisone and will be for life. As any of you with autoimmune diseases know, quite important to take Pred first thing in the morning. For me it kicks in about an hour or so after I take it. It’s also a jump starter. After that I feed pets, have decaf, and eat breakfast around 8-9 (get up around 6-7). I then take other meds then (needed with food). Then workout and then just before lunch HRT because interferes with meds. I also have restless leg syndrome, can cause bad sleep so often need to take sleep meds. One of my current autoimmune issues causes bone pain, but I just plow through as much as I can, but also worse at night, thus the sleep meds. Though I have autoimmune diseases, I am fit, active. I’m also small, but healthy.
Given all this, any thoughts on timing? I think I’d ideally like to try after breakfast and just before workout. Anyone done this? Taken, then about 1/2 hour later do your workout? I lift and do cardio.
2. Travel: I do international travel, one reason doc wanted me to use Tymlos as it travels better. I am not worried about it for domestic travel but I do a lot of international trips and long hauls. What do you all use for carrying the med, the pens and the sharps container? The sharps deal they sent me is big! I’m usually on an international trip for 3-4 weeks at a time. Any ideas here? Do I haul the sharps container over, from place to place and then back with me to the US (I assume so). I’m usually team carry on so space is a premium for me. Any travel products that work for you?
Thanks for any ideas. This board has been a lifesaver. BTW I am (ok with doc) starting slow and working up.
Cheers

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

Profile picture for beachesanddreams @beachesanddreams

@cpog Thank you for the lovely hibiscus flower! I love that color! Do you grow them?

It’s amazing to me how synched you and I are with regard to “covering all bases” prior to starting.

I remembered to call my dentist yesterday afternoon to keep him in the loop and see if he’ll still keep me as a patient once I start.

I, too, did Fosamax for four years, and it worked really well, until it didn’t anymore. No doctor ever suggested taking a break from it once the numbers looked good, which is what is supposed to happen. I did really well on it side-effect wise. I didn’t have a single one.

I feel if we are able to maintain just a little control over what we put into our bodies - like a titrated dose to start - that would go a long way in feeling both supported by our doctors and comfortable that the medication will be a success.

Perhaps this is the point I must make with my doctor.

It’s very hard having both an autoimmune condition and osteoporosis at the same time, though I’ve learned the two often do go together. I feel for you on that front, I really do.

Good luck on your bloodwork this week. I’ll be thinking of you.

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@beachesanddreams Thank you so much! I hope my bloodwork comes out alright and everything is a go.
Yes! we grow all kinds of hibiscusus and lots of different flowers and vegetables in our garden.
We truly seem to be very similar and synched! I didn't realize you also had an auto immune disease. You're very right about them being linked. I sometimes wonder if that's what started causing my osteoporosis at a young age. I was diagnosed at 49 but who knows how long I had had it. Hope to keep in touch! Have a good rest of your weekend!

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“Abaloparatide also activates Gq and β-arrestin-1 pathway downstream of PTH1R as off-targets in target cells such as the testis and epididymis, which have been associated with anti-inflammatory effects“

Some studies, it seems they found this as an aside.

It makes me feel like I got a double dose of Pred for the day. I have 3 autoimmune diseases. So far it’s been fine, I ramped up to 5 clicks in the first week. Will be starting 6 this coming week and hope to make it to full dose by the end of the week. This is just what worked for me.

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Profile picture for lp30 @lp30

PS I am also small, and finding places on my stomach to inject was the biggest pain. None of it hurts, but some spots for me are a bit uncomfortable and I don’t know why. The lower the better in my case! It becomes second nature. I haven’t traveled yet, but chose Tymlos over Forteo because it does not need refrigeration (which I’d find a huge pain. ) I researched Tymlos to death, and it caused me so much anxiety. But so far so good!Best wishes to everyone on this journey!

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@lp30 I’ve researched it to death too, and I’m so glad it’s working for you so far, that’s wonderful!

I am reading a book called, “The Embodied Healer: A Somatic Path to Activate the Chakras, Awaken Your Senses, and Remember Your Divine Self.”

The author is Kamala Ingrid. She is a yoga instructor, and works with people in breath work and energy healing, among several other things. I know her personally, and am contemplating working with her as I use this drug as I work towards a healthier life.

From her book: in Sanskrit, the part of the abdomen below the navel is the Sacral Chakra. It governs our capacity to feel, desire, create, and experience sensual pleasure.

I cried reading this because it’s the most sensitive area of my own body - as it likely is for the majority of women - and I believe this is the primary reason injecting in that part of the abdomen is so difficult for us.

I wish we could inject in the thigh. For me, that would be so much easier to take.

But for now, I’m really happy for you and your progress!

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Profile picture for cpog @cpog

@beachesanddreams Thank you so much! I hope my bloodwork comes out alright and everything is a go.
Yes! we grow all kinds of hibiscusus and lots of different flowers and vegetables in our garden.
We truly seem to be very similar and synched! I didn't realize you also had an auto immune disease. You're very right about them being linked. I sometimes wonder if that's what started causing my osteoporosis at a young age. I was diagnosed at 49 but who knows how long I had had it. Hope to keep in touch! Have a good rest of your weekend!

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@cpog At the moment, no specific name is given to my autoimmunity. Xrays and an MRI show no evidence of inflammation or inflammatory damage to my joints. My doctor says this is reassuring, but we still can’t rule out an inflammatory condition.

Right now I’m focusing on the osteoporosis, and she was in agreement with that. I’m doing so much better off methotrexate and Skyrizi; in fact, for me, both caused additional inflammation, which is what I’m managing now with exercise, gentle stretching, heat or cold therapy, and light massage. I’ve also really prioritized rest and sleep while we try to figure out what’s really going on.

My weekend was bliss. I felt great, spent lots of time outdoors, and rested a bit.

I’m also wearing my Apple Watch to bed and tracking my sleep, and that’s been kind of fun, actually!

Oh, the things that bring us joy as we age. 😂

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Profile picture for ccps101 @ccps101

“Abaloparatide also activates Gq and β-arrestin-1 pathway downstream of PTH1R as off-targets in target cells such as the testis and epididymis, which have been associated with anti-inflammatory effects“

Some studies, it seems they found this as an aside.

It makes me feel like I got a double dose of Pred for the day. I have 3 autoimmune diseases. So far it’s been fine, I ramped up to 5 clicks in the first week. Will be starting 6 this coming week and hope to make it to full dose by the end of the week. This is just what worked for me.

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@ccps101
Thanks so much for this, and good for you on your progress. I’m so happy to read how well you’re doing!

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Profile picture for lp30 @lp30

@beachesanddreams I hope it is going well for you! I want to give you encouragement. I was diagnosed with severe osteoporosis in my 30’s and have so worried about side effects that I put it off until now, and I’m almost 63. A few spontaneous spinal compression fractures woke me up. My first few days I felt naseous and a racing heart for a bit, but looking back I think this was fear , not the drug. I tried smaller doses and it made no difference. I take it every morning as soon as I get up so I don’t forget. Often I’ll have a small snack then off to my workout. I have had no side effects since and am glad I finally took the plunge; I wish I’d done it sooner. I really hope it’s going well for you too!

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@lp30 This is all great information to know, thank you. I like that taking it in the morning works so well for you. I hope that might be the case for me too!

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If helpful to know I used Tymlos for two years, took it right after breakfast but before working out and also traveled international multiple times with it. The Tymlos nurse was great, I have sleep issues so she actually recommended taking it when I was relaxed right after having breakfast and was hydrated. I would remain seated for at least 15 minutes after taking it, usually waiting to dive into my daily exercise routine for at least 30 minutes. Worked great for me. For travel, I just took it in the travel box that Tymlos provided me and got a travel sharps container for longer trips. I kept it in my carry on so it was always with me. Never any issues with TSA or customs. I had an increase of over 20% in my spinal BMD on Tymlos so it was all worth it for me!

REPLY
Profile picture for misst1970 @misst1970

If helpful to know I used Tymlos for two years, took it right after breakfast but before working out and also traveled international multiple times with it. The Tymlos nurse was great, I have sleep issues so she actually recommended taking it when I was relaxed right after having breakfast and was hydrated. I would remain seated for at least 15 minutes after taking it, usually waiting to dive into my daily exercise routine for at least 30 minutes. Worked great for me. For travel, I just took it in the travel box that Tymlos provided me and got a travel sharps container for longer trips. I kept it in my carry on so it was always with me. Never any issues with TSA or customs. I had an increase of over 20% in my spinal BMD on Tymlos so it was all worth it for me!

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@misst1970 I would agree with food first. Have found for me that I need some food. I was taking Tymlos after breakfast but like taking it earlier. What I do is have some yogurt or a half bowl of cereal or half of a banana, take some swigs of Electrolit, and then am fine. Times when I did on mostly empty stomach wasn’t great. Otherwise I would take after breakfast.

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Profile picture for beachesanddreams @beachesanddreams

@lp30 I’ve researched it to death too, and I’m so glad it’s working for you so far, that’s wonderful!

I am reading a book called, “The Embodied Healer: A Somatic Path to Activate the Chakras, Awaken Your Senses, and Remember Your Divine Self.”

The author is Kamala Ingrid. She is a yoga instructor, and works with people in breath work and energy healing, among several other things. I know her personally, and am contemplating working with her as I use this drug as I work towards a healthier life.

From her book: in Sanskrit, the part of the abdomen below the navel is the Sacral Chakra. It governs our capacity to feel, desire, create, and experience sensual pleasure.

I cried reading this because it’s the most sensitive area of my own body - as it likely is for the majority of women - and I believe this is the primary reason injecting in that part of the abdomen is so difficult for us.

I wish we could inject in the thigh. For me, that would be so much easier to take.

But for now, I’m really happy for you and your progress!

Jump to this post

@beachesanddreams
I’ve been injecting Tymlos for 14 months, rotating sites between thighs and abdomen. I’m still building bone.

REPLY
Profile picture for misst1970 @misst1970

If helpful to know I used Tymlos for two years, took it right after breakfast but before working out and also traveled international multiple times with it. The Tymlos nurse was great, I have sleep issues so she actually recommended taking it when I was relaxed right after having breakfast and was hydrated. I would remain seated for at least 15 minutes after taking it, usually waiting to dive into my daily exercise routine for at least 30 minutes. Worked great for me. For travel, I just took it in the travel box that Tymlos provided me and got a travel sharps container for longer trips. I kept it in my carry on so it was always with me. Never any issues with TSA or customs. I had an increase of over 20% in my spinal BMD on Tymlos so it was all worth it for me!

Jump to this post

@misst1970 Odd follow up, but going on a month long European trip this year. Did you find a place to dispose of the travel sharps container on the road or did you bring it back with you? Someone reminded me most public restrooms have a receptical for sharps. Wondering about disposing that way just before heading home. If not I can bring home. Thanks

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