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Tymlos - can you stop it suddenly?
Osteoporosis & Bone Health | Last Active: 10 hours ago | Replies (15)Comment receiving replies
Thank you. Due to communications issues with my doctor, I ended up stopping Tymlos about three weeks ago and discarding the remaining supply. I did not realize that non-daily options were possible. But also, I was really getting sick at the end, with mental confusion being a big part of the problem. VERY IMPORTANT: EVEN THOUGH MY SERUM CALCIUM WAS ONLY 10.3-10.6, the muscle cramps, upset stomach, and cognitivie issues were serious. I did not realize how sick I was until I stopped the medication and although I tried to tell them, both my primary and endocrinologist did not acknowledge my attempts to say things were pretty bad.
Now that my brain is back I have gotten them to listen but dang, what a frustrating experience. What else do I want to say? I want to scream in frustration. On my own, I spent a lot of time and effort getting psychological testing to find out what was going on with cognition, memory, and emotions. I was pretty sure that I wasn't in some kind of dementia slide because I was so aware of what was happening; however, the slow (over a period of 9 months) degradation of emotional self-regulation, focus, short-term memory, and ability to think didn't present as an identifiable side effect. And now, boom. My brain is back.
Now it is recommended that I take Reclast, and I gotta say, I'm pretty nervous about that.
Replies to "Thank you. Due to communications issues with my doctor, I ended up stopping Tymlos about three..."
@rosemaryrocks I ended my Tymlos regimen a few months ago, and opted to take Fosamax. I don't like the idea of an infusion. A weekly pill, I can handle, and if there's an issue, I can stop. You can't undo an infusion.
@rosemaryrocks
any chance for Forteo.
@rosemaryrocks I stopped Tymlos after 35 days. I started with two clicks and worked up to five. Then one night, I had an episode where it felt like my skin was on fire but with no fever and no sweating. I also kept urinating a lot. It was very scary and uncomfortable. Blood test showed my bilirubin was high and my sodium and chloride levels were low. My rheumatologist didn't think Tymlos had caused it.
While I was taking Tymlos, I felt very fatigued and sluggish. I had a good day occasionally, but it was rare. My stomach was also bloated. I've had GI issues for most of my life but this seemed different. My hair was thinning too. Overall, I just didn't feel right, until I stopped taking it.
As many have mentioned, I have conflicted feelings about these medications and the side effects. I drove myself crazy researching them all. I want to do something to treat the osteoporosis but there are limits to making myself sick in the process. Also, once you reach the medication time limits, you have to start a different one with the uncertainty of how your system will react.
I'm very grateful that I haven't had a fracture, yet. Out of all the medications, Tymlos looked like my best bet since my spine numbers are the lowest. I'm glad I tried it and also happy for the many people who can take it with no significant side effects. I have friends who have done very well on these medications.
Not sure what I'll do next because, with GI issues, high blood pressure, low weight, and sensitivity to medications, the options don't seem good for me. I'll see what my next DEXA numbers are in 2028. In the meantime, I'm looking more closely at making the most out of the self-managed options, like supplements, diet and exercise. A small thing that has already helped my GI issues is switching from calcium carbonate to calcium citrate. More gentler on my system.
One thing I can say for sure is this forum has been immensely helpful to me. I'm grateful to everyone who has participated and continue to share their experiences. Thank you all so very much. And thanks also to the Mayo Clinic for providing the space to host these discussions.
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@rosemaryrocks Important to add that the Tymlos was highly effective in moving me from osteoporosis to ostopenia. Would I do this again? Yes - but only with a doctor's committment to closely monitor my serum calcium. An annual dr visit when taking Tymlos is insufficient, imo.