6-month Tymlos report

Posted by lnl @lnl, Oct 31 8:30am

Hi, Everyone– As promised– here is my report after 6 months: As many of you know from my other posts, I have struggled with Tymlos from the start– the heart palps, hair loss, the whole array of issues. I also never got beyond 4 clicks. Anyway, knowing that the greatest gains typically occur in the first 6 months and that Tymlos is better for spine than hips (my real problem), I had a dexa to see how I wanted to proceed. Results: my spine went from a -1.2 to -1.0, my R hip stayed constant at -3, and my L hip went from -2.5 to -2.7. So, mixed results, although 4 clicks for only 6 months proved a therapeutic dose for my spine. I’m already back on Actonel. Tymlos just isn’t for me. I was miserable the whole time and never really got the shots to not hurt. I could write more, but if anyone wants more info, I’ll be glad to answer.

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@lnl that is not a significant gain on spine, unfortunately, at least according to my doc. I am so sorry Tymlos was not tolerable for you! And that you endured 6 months! It is a good thing, though, that you held steady. Your spine looks great, your L hip-to me- is enviable but yeah is still osteoporotic, and your biggest issue is R hip. My biggest issue now isL femur neck. I am buying hip pads: they are online!

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@windyshores

@lnl that is not a significant gain on spine, unfortunately, at least according to my doc. I am so sorry Tymlos was not tolerable for you! And that you endured 6 months! It is a good thing, though, that you held steady. Your spine looks great, your L hip-to me- is enviable but yeah is still osteoporotic, and your biggest issue is R hip. My biggest issue now isL femur neck. I am buying hip pads: they are online!

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I just noticed a serious typo that will make my spine gains even less significant: I went from -1.2 to -1.0. But I started out at -1.8 when I went on Actonel in 2019, so all in all, I'm better than I was. Now I'm just dealing with fallout: my cholesterol spiked while on Tymlos, and now I've got a bottle full of statins that I'm probably not going to take. (I've tried 3 other brands and I can't tolerate any of them…). Good luck @windyshores with your hips. And thank you for all your guidance. I'm still going to stay on this site– who knows, once I get over my terror of Reclast, maybe I'll even try that one day.

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@lnl

I just noticed a serious typo that will make my spine gains even less significant: I went from -1.2 to -1.0. But I started out at -1.8 when I went on Actonel in 2019, so all in all, I'm better than I was. Now I'm just dealing with fallout: my cholesterol spiked while on Tymlos, and now I've got a bottle full of statins that I'm probably not going to take. (I've tried 3 other brands and I can't tolerate any of them…). Good luck @windyshores with your hips. And thank you for all your guidance. I'm still going to stay on this site– who knows, once I get over my terror of Reclast, maybe I'll even try that one day.

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Hi @lnl, I edited your original post to reflect your spine numbers more accurately.

You mentioned your terror of Reclast, are you most concerned with the known potential side effects of Reclast?

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Yes, indeedy! Just on this site alone it has been a horror show of bad reactions to the infusion. Yes, of course some people do just fine. We all know that. But I'm not thrilled with my odds. (And thanks for the edit.)

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@lnl

Yes, indeedy! Just on this site alone it has been a horror show of bad reactions to the infusion. Yes, of course some people do just fine. We all know that. But I'm not thrilled with my odds. (And thanks for the edit.)

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@lnl isn't your spine fine with those numbers?

Ask your doc about a test dose of Reclast. My doc was going to give me a 20% dose, with IV hydration including saline and a slow infusion.

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Hi, @windyshores — Yes, my spine is fine. I'm pleased with -1.0 and am glad to start to "lock" that in with Actonel. As for Reclast– I'm sure at some point I'll tire of the weekly Actonel (I'm not side-effect free, as I've mentioned), and consider Reclast anew. Reclast is my doc's choice, btw. Also–I read somewhere– I think just anecdotally, not a paper–that if you've already got a bizphosphonate in you that Reclast is easier on your system– you've been primed, so to speak–and that the probability of bad outcomes, even temporary ones, is diminished. I have no idea if that's true. Have you heard anything about that? If it eventually comes to Reclast, I will ask for a test dose and all the fixings.

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