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.

beachesanddreams | @beachesanddreams | Feb 2 1:08pm

@ccps101 Thank you for your replies, as well as your uplifting positivity. The sooner I start, the sooner I’ll know if it’s even the right drug for me.

I only have OP in my lumbar spine, currently at -3.0. So I am hopeful I may not have to even be on it that long, if I respond well.

I just have to take the leap. 💜

gently | @gently | Feb 2 3:46pm

In reply to @beachesanddreams "I just want to thank everyone in this thread. I’ve been so afraid to start Tymlos,..." + (show)

@beachesanddreams, it is intelligent to be cautious. You could be proud of your diligence.

ccps101 | @ccps101 | Feb 2 4:49pm

In reply to @beachesanddreams "@ccps101 Thank you for your replies, as well as your uplifting positivity. The sooner I start,..." + (show)

@beachesanddreams I agree you need to do your own diligence and discuss everything with your doctors. What works for me may not for you, we’re all different. Just FYI my OP is also just in my spine. I’m proceeding after much research and discussion with my own doctors. Good luck to you!

beachesanddreams | @beachesanddreams | Feb 2 6:51pm

In reply to @gently "@beachesanddreams, it is intelligent to be cautious. You could be proud of your diligence." + (show)

@gently You always know just what to say. You’re right…I should be proud that I’m serious with regard to my osteoporosis and taking care of myself, rather than sticking my head in the proverbial sand. Thank you for that. 🙏🏻

This afternoon, I signed up for the Tymlos Clinical Educator Network. A representative at Radius suggested I do so. Hopefully I can be connected to people who can answer some of my questions/concerns with regard to this treatment.

What a wonderful community this is. I’m grateful for everyone’s kindness today. ✨

cpog | @cpog | Feb 3 1:47am

In reply to @beachesanddreams "I just want to thank everyone in this thread. I’ve been so afraid to start Tymlos,..." + (show)

@beachesanddreams I am going through exctly what you are right now. I have been recommended to stary tymlos as the best option for my severe osteoporosis and am awaitng for the prescription to come through from the doctor as it was approved by my insurance. I am so afraid and hesitant to start this drug as well, and afraid of how it will impact and change my life along with all the possible side effects I may have. I wanted to give it a chance at least and see how I did barring any side effects and impacts (mental and physical) to my life. I have question after question running through my head and this string of questions and answers from everyone has helped me not feel so alone. I'm here if you need some support as we go through this together. Please feel free to private message me 🙂

beachesanddreams | @beachesanddreams | Feb 4 12:46pm

In reply to @cpog "@beachesanddreams I am going through exctly what you are right now. I have been recommended to..." + (show)

@cpog There are days it’s the equivalent of a part-time job with all the questions and worries and concerns.

I have trained myself: no searching Dr. Internet after 6 pm.

A big YES to supporting each other through this. Thank you for the PM offer…I will take you up on that! 🙏🏻

cpog | @cpog | Feb 4 9:58pm

In reply to @beachesanddreams "@gently You always know just what to say. You’re right…I should be proud that I’m serious..." + (show)

@beachesanddreams I am also signing up for the Clinical Educator Network at Radius as well and hope this will be helpful as well. I have so many questions.....

beachesanddreams | @beachesanddreams | Feb 5 4:10pm

In reply to @cpog "@beachesanddreams I am also signing up for the Clinical Educator Network at Radius as well and..." + (show)

@cpog I just got off the phone with mine about 20 minutes ago. I hope yours goes well…let me know if you’re able! ✨

cpog | @cpog | Feb 6 2:32am

@beachesanddreams I will definitely let you know! I have all the info ready but am still waiting for my prescription to go to the specialty pharmacy from the doctor. It's already been approved by my insurance though. When I have the medication in hand, I am supposed to have an appt with my drs office to go over everything and the instructions. That's if I want, which I do. I will take any help I can get! Do you have your medication yet and have you done the first injection?

beachesanddreams | @beachesanddreams | Feb 6 11:54am

In reply to @cpog "@beachesanddreams I will definitely let you know! I have all the info ready but am still..." + (show)

@cpog I have been approved. All I have to do is place the order.

I haven’t yet because I’m still gathering information to try to allay my serious concerns about side effects.

I spent all of last year dealing with very difficult side effects due to two drugs I was prescribed for a supposed inflammatory condition. I lost hair for 8 months. I developed more inflammation, causing me to have to see four different specialists. I’m off those drugs now, and am just relishing in feeling better, you know?

I want to deal with my osteoporosis, truly I do, especially because it isn’t even that bad.

I spoke with a Tymlos clinical educator at Radius yesterday, and while she was courteous and professional, the message was, if you have side effects, go to your doctor. There’s no information on how to mitigate them and make the drug easier to take.

The advice I’ve seen on this forum is the most helpful and comprehensive I’ve seen. Two rheumatologists have not told me anything about this drug, it’s just here, take this, I’ll see you in three months.

I want to start low and titrate up. Doc says no, educator says she has heard other patients do that but they can’t recommend it due to FDA guidelines.

I know I have to dive in. The educator told me they can do an injection instruction over the phone.

What gets me about so many injectables especially is that the dosage for small, slim women with few to no symptoms is the same as a 250-lb man with several to many symptoms.

This is the part where I have to take a deep breath.

Keep me posted…🙏🏻🌺