Tymlos - can you stop it suddenly?

@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.

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.

@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.

@dorob
How often were you getting blood tests for monitoring calcium etc?

@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.

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?

@osteopatient2026 The 6-8 month point is where my bone markers showed my peak response to Tymlos and that is when I felt the worst!! Are you watching your Vit D too? I noticed that for me if it got too low like 25-35ng/Ml (Vit D, 25-OH) I got shin and wrist pain. If it got too high (above 60ng/Ml) it threw me into hypercalcemia (Vit D was 73 and calcium jumped to 9.8mg/dL) and I got confused, fatigued, and had terrible random bone pain. My Endo said he likes to see Vit D at about 40. Personally I feel best around 40-50 for Vit D and within a tight range either side of 9 for serum calcium. I think it might be worth tracking by journaling how you feel and checking these and adjusting accordingly. Just a suggestion... I think it's crazy they don't mandate checking Vit and D and calcium regularly during this therapy because it is so crucial to the compliance of patients (that is, so many drop out because of these effects) and ultimately to the success of this medicine!

@rosemaryrocks
Were your leg cramps only in the early morning 3-4 am?

@michieg
Thx for the info

My 25-hydroxy vitamin D level is 66 ng/mL
He said it was fine?
My Calcium was 9.6 - it’s been at that or around that for years.
Appreciating your input.

@rosemaryrocks
I am so glad you are in the right track. I know it is difficult to be your own advocate when things are spiraling downhill and often we don’t feel we can control when we can be seen (or heard) by medical folks.

Now that you are off Tymlos, are you going to support the bone-building it has done with another maintenance drug like Reclast?