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Tymlos - can you stop it suddenly?

Posted by rosemaryrocks @rosemaryrocks, May 18 5:38pm

I had huge improvement on DEXA scan after 9 months of Tymlos. I was thinking about quitting it because of side effects but the improvment made me think it was worth continuing. The symptoms of hypercalcimia were getting very uncomfortable.
I saw the endocrinologist, who told me to talk to my doc about taking a different blood pressure medication to reduce the hypercalcemia - but I can't get in for an enitre month. So I stopped taking Tymlos 5 days ago mostly due to exreme leg cramps but I feel SO.MUCH.BETTER that I"m thinking I should just quit.

However, my physical and mental energy levels are now so low that I can barely function. I would think that I am depressed, but it's not like I don't care about anything - it's that there's nothing worth caring about. So this isn't good. But what do I do? I read that stopping Tymlos without a back up plan is bad for you, my physical body feels tons better, and some aspect of my mental body is draining faster than a cell phone searching for a signal.
Both the endocrinologist and my primary care doc are unavailable, and there's not point in going to an urgent care because they'll just tell me make an appt with primary care. But something is really not right. Any thoughts on how to move forward?

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gently | @gently | Jun 18 2:52pm
In reply to @rosemaryrocks "@gently I think the doc is responding to the fact that I have occasional heartburn and..." + (show)
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@gently I think the doc is responding to the fact that I have occasional heartburn and doesn't want to risk it, since I was so sensitive to the so-called minor changes caused by the increased calcium levels. Thank you for the suggesion.

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@rosemaryrocks, it's only that Forteo is a much lower dose of medication and reports few incidents of hypercalcemia. Your doctor knows best. Oral Fosamax with a history of reflux seems an interesting choice. Bless those bones.

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osteopatient2026 | @osteopatient2026 | 16 hours ago

I’m getting leg cramps (ankle, shin, calf muscle) at night. I am taking Tymlos 9 months as of Aug 12, 2026. Anyone verify that Tymlos can or does cause cramps at night?

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gently | @gently | 12 hours ago

You might try magnesium glycinate at in the evening. Calcium stimulates the nerves in muscles to contract. Magnesium relaxes the nerves. If you are injecting at night, you may be flooding the muscles with calcium, causing a calcium/magnesium imbalance.

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osteopatient2026 | @osteopatient2026 | 10 hours ago
In reply to @gently "You might try magnesium glycinate at in the evening. Calcium stimulates the nerves in muscles to..." + (show)
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You might try magnesium glycinate at in the evening. Calcium stimulates the nerves in muscles to contract. Magnesium relaxes the nerves. If you are injecting at night, you may be flooding the muscles with calcium, causing a calcium/magnesium imbalance.

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@gently
Thank you. Great point will give it a try.

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neko | @neko | 8 hours ago
In reply to @rosemaryrocks "Thank you. Due to communications issues with my doctor, I ended up stopping Tymlos about three..." + (show)
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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.

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@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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