Tymlos side effects I've encountered
Hi. I started Tymlos in February 2022 and about a month after starting it I began experiencing excruciating muscle spasms, esp in upper thighs and feet, neuropathy, as well as debilitating hip, leg, and back pain. My doctor wanted me to try and stay on it for at least a year, but I absolutely could not go on living with the pain I experienced. I stopped taking the Tymlos completely 6 days ago and all my symptoms have subsided. Has anyone else experienced these side effects while on Tymlos?
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Thank you. You are one of the people I look to for advice and encouragement. Yes, we've talked about the morning/evening thing. Right now--because of needing to lie down for at least 20 minutes after the injection-- evening is best. This approach could change for any number of reasons. I obviously have no idea where I'll top out with the clicks, but I'll keep this group posted in the belief that it could help others.
I was staying in bed after my injection but for the last half of treatment I found I handled side effects much better if I got up and out! The wooziness, heart palps etc. were worse when I lay down!! Everyone is different and this is so counterintuitive. But now I inject and start my day- even go to art class right after shot. Not saying that is true for anyone else.....For me the big thing was risk of afib at night- that is why I switched.
Wow thank you for more amazing information. My doc literally filled the rx, I received it and that was it. Do you follow up with bloodwork after starting tymlos? If so at what frequency and what tests? Sorry if I’m asking too many questions! Thank you again!
Thank you so much and congrats on your progress!
@jmmjml my doc tested D and calcium levels, maybe aldosterone-? Don't remember! Three months in and after one year. The main concern is that calcium levels not be too high. I also took my blood pressure early on because I run low and Tymlos lowers blood pressure. I hydrate before the shot.
McCormick wanted baseline P1NP and CTX and I am having a P1NP next week to see if Tymlos is still working. CTX will be for checking on Reclast when I have it.
I started at 3 clicks, and went up a click every 2 days.
I am now at 7 clicks. (almost at full dose) and side effects have been scarce and very mild.
I made an Excel table to keep track of the dosing and side effects. So far, so good.
Thank you. I’m going to make an appointment with dr. McCormick. Sounds like he’s very helpful.
Thank you so much!
Just want to add that my doc told me even a half dose at 4 clicks would be helpful.
Hi, Everyone-- Lisa checking in, as promised. I've got a report and a question about a side effect. Report: I am in week 7 of Tymlos and have managed to make it up to 5 clicks. This has been a struggle as many of you know. The only side effect I am left with is the tachycardia, which I manage by elevating my legs for about 10 minutes after the injection. It absolutely works. Question: Have any of you who are ahead of me experienced hair loss? It's starting for me. It's not that clumps of hair are falling out; rather, my hair is thinning quickly-- I am losing lots of single hairs. I know it's not listed as an official side effect, but women on this site and Inspire have discussed it. Basically, does it stop the way many other side effects go away as your body gets used to the drug? Thanks for any info.