Took a break from Tymlos and want to restart at lower dose
Hello, I took a 2-week break from Tymlos due to side effects, which my doctor approved. I’m starting back in a few days and want to try a lower dose to hopefully ease the side effects without compromising bone health. Doc seems reluctant to do this, even though she mentioned it as an advantage of Tymlos when I started it in January. I would love to hear about your experiences with a lower Tymlos dose. Thank you.
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Hello, I have been on Tymlos for 9 mo. and for me it has gotten much easier the longer I have been on it. First 3 mo. were rough. I do recommend giving yourse,f less clicks if you have a lot of side effects. I have worked up to 5-6 clicks. At first I started with 3 clicks. I am doing much better. I find out if Tymlos is helping me in July.
I wish you good results with Tymlos.
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6 ReactionsI also was having side effect issues on Tymlos that I started almost a month ago. Similar to you, my provider was hesitant to allow me to go to half a dose (4 clicks). I spoke with a Tymlos clinical educator for 70 minutes and shared some of the information I found in this forum with my provider. The clinical educator also recommended that my provider call Medical call center and ask for an MSL (Medical Science Liaison) to see if additional questions or concerns can be answered. I have been on a half dose now for 8 nights (4 clicks/40 mcg) am I side effects have reduced although or not completely gone. They are much more manageable and are allowing me to remain on the medication. Interesting that four nights ago I started to develop for the first time the injection site welts that are about nickel-sized. A bit surprised, because they didn't start until about 3 weeks into my treatment. I was wondering if there's any chance it could be connected to nearing the 30-day shelf life of a non-refrigerated pen....??? Anyways, if the decision regarding the side effects is getting you close to discontinuing the drug, as mine were, I would definitely recommend reducing the dose to give yourself a chance to remain on the med! Some benefits are clearly better than none. My first P1NP was done after 23 (19 full + 4 half) injections and I went from a 52 to 93. Good luck!!
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7 Reactions@lori02 Thank you for your response. Did your provider support your decision to adjust the dose?
@cathyf31 wow! That’s a great result! Yes, I want to stay on the Tymlos having previously tried Evenity, which was a disaster and then Forteo, which also didn’t work out due to side effects. I do feel that Tymlos is a better fit for me, but the side effects were becoming unmanageable..
Thank you for the detailed info - super helpful and I appreciate it. This group has made such a difference in my OP journey.
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2 Reactions@kathleenrmt You're welcome. I just found this group about 2 weeks ago myself and agree that it's incredibly helpful! Otherwise, I would have never known that reducing a dose was an option to present to my provider, before having to abandon Tymlos.
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4 Reactions@cathyf31 It’s great to have the opportunity to learn from others- so much valuable information.
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1 Reaction@cathyf31 I am about to start Tymlos and I'm curious about all the side effects everyone talks about. What are they? Especially the "rough" ones? My doctor completely downplays them as nothing to worry about.
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1 Reaction@shellinaya I also would recommend that you not actually worry about them. The common ones tend to be headache, nausea, dizziness, and injection site reactions. You can Google to get the full list of potential ones; just make sure you're going to a reputable site. If you do run into any side effects that you cannot live with, I hope your provider is willing to let you reduce the dosage. I had to reduce down to half a dose (4 out of the 8 clicks) and am slowly going to titrate back up to a full dose. I just jumped up another click (now 5 clicks at 50 mcg) last night. Hoping my body will settle down again, as I was evidently not sly enough to slip the increase quietly by and it did heighten some of my side effects. Trusting all will settle down and my body will once again adjust. It's too important not to do everything possible to stay on this med. Best wishes!
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2 ReactionsI’ve been on abaloparatide and also had to take a short break early on due to side effects, so I get where you’re coming from. From what my endo told me, the standard issue is that Tymlos is really studied and prescribed at the full dose, so doctors are often reluctant to officially “lower” it because there isn’t strong data showing the same bone-building effect at reduced dosing.
restarting after a break and letting the body re-adjust (side effects often flare again briefly, then settle)
focusing more on timing (night dosing helps a lot) and hydration rather than dose changes.
That was my experience too the side effects were worse right after starting and again after restarting, but they eased after a week or two without changing the dose.
I think your doctor’s hesitation is mostly about sticking to the evidence-based 80 mcg dose rather than titrating. If the side effects are still a problem after restarting, it might be worth discussing switching strategies rather than trying to permanently run a lower dose that may not give full benefit.
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1 Reaction@cathyf31 Thanks. The more I read about side effects the more nervous I get. But it sounds like people can tolerate them or reduce dosage so that's good.
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