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Tymlos-Timing, travel and meds, Oh My!
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
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@beachesanddreams I know what you mean about side effects..... I have lupus as well and have had previous battles with drugs and side effects. It's so scary. I''m tiny as well, 4 ft 11 and 105 lbs. My spine numbers really decreased in one year although I have osteoporosis in other areas as well but my spine is -3.5......I asked my Dr about titration as well and she said not a good idea. The studies done are for the full dose. I was on Fosomax for 4 years from 2013-2017 and the last several years the benefits from it have gradually worn off. I've been betting DEXAS every year. I'm seeing an endocrinologist for the osteoporosis. My rheumatologist is for the lupus. My endocrinologist will send me for bloodwork after I've been on it for a month to check my kidneys. I have a bunch of blood work I'm having done Wednesday that me primary Dr is doing. I want to make sure that everything looks ok before I start this medication......Let's see what next week brings. I'm still waiting for my Dr to send the RX. Hope to talk soon.
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1 Reaction@cpog some doctors are fine with titration. I don’t think I could’ve started with full dose. I started with 2 clicks and was able to ramp up quickly. At 5 now and hoping to keep moving up. Am so glad I was able to do it this way. One thing to consider is something I (and some others on this site) have experienced is that Tymlos seems to have some anti-inflammatory properties (some studies on this) and it has been great as an autoimmune patient. Good luck.
@beachesanddreams I hope you will feel some resolution soon for yourself. As I said, I am on the other side of the spectrum. I was happy to go on this medication)it’s basically a hormone). I was able to do titration and ramp up quickly. I’m glad I did, full dose on day one might have been too much. It’s been good do far. Good luck to you and I hope things go well for you in the future
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1 Reaction@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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2 Reactions@ccps101 “It’s been good so far.”
It’s posts like yours that really help me. Thank you for that, and for your well wishes. 🙏🏻 Keep us posted on your great progress!
@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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5 ReactionsPS 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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5 Reactions@lp30
wow! OP meds for 33years?
That is impressive!
Thank you for encouragement:).
How many times did you have to change to the different meds?
No! I refused meds because of side effect fears and being so young. And 30 years ago, many meds were trials. I just started the Tymlos a few months ago for the first time. I lift weights, take calcium, am active… tried to maintain what I had naturally. But it certainly wasn’t enough. So I finally gave in to the Tymlos, now I’m just hoping for the best. The drs put a lot of fear in me- even said I shouldn’t have kids!- but I’ve got 2 healthy boys in their 20s and I remained pain free and strong until these compression fractures. (They never hurt so I didn’t even know they were there until some kyphosis showed up. )
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1 Reaction@ccps101 I had been reading about titration or what people were calling "clicks" so I asked my Dr. about it because I wasn't familiar. She doesn't apparently do that with any of her patients. So many differences in how some Drs do things. I hope I will be OK doing it this way. Only time will tell. Of course I'm apprehensive in general about the medication....I hadn't heard about Tymlos having some anti-inflammatory properties. That's definitely good news for me as an auto immune patient with lupus. Thank you for that onfo.
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