Tymlos - can you stop it suddenly?

@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.

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?

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.

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

@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.

The person who prescribed the Tymlos should also be closely monitoring your blood and urine calcium. Low blood calcium can cause muscle cramping. High blood calcium can lead to kidney stones. As someone who prescribed the Tymlos in the first place, it is my belief that that person should be managing your calcium issues. I have just experienced someone who wants to dump that kind of follow-up on a primary physician but my stance is, if you give me something that you know is going to affect my calcium levels (both urine and blood) you better be ready to manage it and not dump it on someone else. That would be your endocrinologist.

@osteopatient2026 Indeed it can cause leg cramps. Tell your doc. It may be that your serum calcium is elevated. And don't accept your doc saying "oh it's only xxx (10.6 in my case) so that's not causing your issues." The deciding factor is how your body is responding, not whether most people respond like that or not. In my case, stopping the Tymlos dropped my calcium back to normal range in one week and the horrific leg cramps went away.

@dorob Agreed. The challenge for me was to get either my endocrinologist or my GP to hear me. Seriously, I was mentioning leg cramps from the very first and by then end, I would rate them as an 8 on a 0-10 pain scale. But I didn't realize that until I was off the medication and so I never pushed it. I should have.

Docs are paying better attention now because once my serum calcium returned to normal, along with my mental capacities, which were also affected, I contacted both the docs to state the issue of having not been heard by them even in the previous week, when I was really going downhill. It would have been good for me to have an advocate because when my C was high I was not effectively advocating for myself.

@gently Thanks - I did stop the Tymlos and it was a really good move for me. The doc recommended Reclast and that's been good.

@rosemaryrocks
My last blood calcium test showed 9.6 ……..within the normal limits.
Will check again September…
Hopefully cutting back a bit on the calcium as suggested by gently will help. Just started this week reducing my calcium supplement too 300mg daily…I get the other 900mg from my diet.