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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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I’ve tended to have lowish sodium (at the very bottom or just below the range) for a few years. Had general blood work done last week in preparation for my annual wellness visit, and sodium was a couple of “units” lower (132) after nearly 5 weeks on Tymlos (reduced dose, at 7 clicks then). I have also been experiencing a lot of thirst, which may also be an indication of the lower sodium. Will be monitoring this.
@tymlos666 I used it up to two weeks past 30 days. I did check with MD, and the company too.
I don’t keep it in the fridge once I open the pen for the first time, so I discard after 30 days as indicated. I don’t know how long it lasts if you keep it refrigerated. I talked to the Tymlos nurse (clinical educator) about it, but she said to discard after 30 days no matter what.
Something that is safe and effective on day 30 does not become unusable at midnight of the 30th day. The efficacy may start deteriorating at a faster rate but should be usable to another day or 2.
Studies were for 30 days of use and most providers cannot veer from that. However the company told me that if it remains refrigerated, even if opened and used, it can last longer. How long is the question. I used it up to two weeks in the beginning but got it down to one week. If I traveled I kept it cooled with cold packs in a cooler.
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1 ReactionI was not suggesting that. I merely relayed what I was told. I’m using this medication as directed. Others can do was they see fit.
Maybe I misunderstood, but we're you told to discard Tymlos after 30 days even if it was kept Refrigerated the entire time?
If so, that doesn't make any sense. My RX authorized a 90 day supply. So I obviously keep pens in the refrigerator more than 30 days.
That 30 day rule applies to a pen has been used. The pharmacy kept them refrigerated before dispensing.
Hi there…unopened boxes of Tymlos need to stay refrigerated. Once a pen is used, you can store it at room temps between 20 and 25 degrees C (68 and 77 degrees F). I often will store my used pens in the fridge if it gets too warm in my house, and while traveling I keep the pen in a cooler bag. Rose 🌹
@dooshie and @hardingly Tymlos will last longer if you keep it in the fridge, even if opened and uses. Many who start with a partial dose will need to use it past 30 days.
The only reason to keep it out is silly in my view: based on the idea that a cooler shot is more uncomfortable. I learned this with a kid with type 1 diabetes. It's fine to keep it in the fridge. Or not (if you do full dose).