Tymlos side effects I've encountered

Posted by anniesan @anniesan, Oct 2, 2022

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 have been on Tymlos for two months tomorrow. I take it midday after lunch. Has anyone suffered with frequent urination from Tymlos. I have been getting up 6 to 8 times a night and this is not something I can live with for much longer.

I have a follow-up appointment with my endocrinologist tomorrow and will ask her what to do about this. I am hoping I do not have to stop taking Tymlos.

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@ddpetaluma

I have been on Tymlos for two months tomorrow. I take it midday after lunch. Has anyone suffered with frequent urination from Tymlos. I have been getting up 6 to 8 times a night and this is not something I can live with for much longer.

I have a follow-up appointment with my endocrinologist tomorrow and will ask her what to do about this. I am hoping I do not have to stop taking Tymlos.

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@ddpetaluma, I have the same problem with Forteo. I get up 3 times a night and can't sleep after the third time. I am not getting any quality sleep. My PA Endo said that the medication can do this, and she suggested taking it during the day. I tried taking it after dinner. This helped for a few days, then didn't. Another endocrinologist suggested drinking salt water before bed. That helped for a few days, then stopped. I have hypercalciuria and I think that too much calcium may be causing so much urination. I also have made an effort to drink enough water during the day, to safe guard from kidney stones and keep my blood pressure normal. The last NP Endo thought I might have a urinary track infection, but my urine is clear.

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I have prediabetes and have noticed that my blood glucose levels are higher than they were (from finger sticks). Will ask my dr to check A1C during lab work next week. My chat GPT says there are anecdotal reports of this from Tymlos. This could cause more frequent need to urinate

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@drsuefowler

@ddpetaluma, I have the same problem with Forteo. I get up 3 times a night and can't sleep after the third time. I am not getting any quality sleep. My PA Endo said that the medication can do this, and she suggested taking it during the day. I tried taking it after dinner. This helped for a few days, then didn't. Another endocrinologist suggested drinking salt water before bed. That helped for a few days, then stopped. I have hypercalciuria and I think that too much calcium may be causing so much urination. I also have made an effort to drink enough water during the day, to safe guard from kidney stones and keep my blood pressure normal. The last NP Endo thought I might have a urinary track infection, but my urine is clear.

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@drsuefowler ...yes, I have had 4 different urine tests and my urine is clear. I am seeing my endo today and we will see what she says. Have you tried taking a dose lower than 80mcg? I will talk to my endo today about lowering dose and let you know the results in a couple of weeks.

I am so sorry you are going through this. It is awful!

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@drsuefowler

@ddpetaluma, I have the same problem with Forteo. I get up 3 times a night and can't sleep after the third time. I am not getting any quality sleep. My PA Endo said that the medication can do this, and she suggested taking it during the day. I tried taking it after dinner. This helped for a few days, then didn't. Another endocrinologist suggested drinking salt water before bed. That helped for a few days, then stopped. I have hypercalciuria and I think that too much calcium may be causing so much urination. I also have made an effort to drink enough water during the day, to safe guard from kidney stones and keep my blood pressure normal. The last NP Endo thought I might have a urinary track infection, but my urine is clear.

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I, too, suspect the calcium. Interesting about the salt helping with retention. I'd want a urine calcium for hypercalciuria, which can be problematic.

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@ddpetaluma

@drsuefowler ...yes, I have had 4 different urine tests and my urine is clear. I am seeing my endo today and we will see what she says. Have you tried taking a dose lower than 80mcg? I will talk to my endo today about lowering dose and let you know the results in a couple of weeks.

I am so sorry you are going through this. It is awful!

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@ddpetaluma, I took a half dose if Tymlos for 10 months. I had improvement on my spine, but no change on hips. Good luck with your endo appt. I hope she gives you some good help. I'm afraid that we can't grow bone without good, quality sleep.

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@drsuefowler

@ddpetaluma, I took a half dose if Tymlos for 10 months. I had improvement on my spine, but no change on hips. Good luck with your endo appt. I hope she gives you some good help. I'm afraid that we can't grow bone without good, quality sleep.

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@drsuefowler - The appointment was a bit rushed. I am supposed to cut down my calcium supplements by half and to do some tests (blood and urine). I will let you know as things progress. My Endo was a bit dismissive of my nocturia and that is of concern. We have to have good, quality sleep!

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Anniesan Regarding "excruciating muscle spasms, esp in upper thighs and feet" ,I could have written this.! I had to jump out of bed last night and stand for 5 minutes to try to get the pain to stop. It was excruciating. I didn't know if that was bone pain from the tymols or what. I'm in my 9th month of Tymlos and had an extremely high P1NP level (715) and don't get another draw until May.

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@zygote

Anniesan Regarding "excruciating muscle spasms, esp in upper thighs and feet" ,I could have written this.! I had to jump out of bed last night and stand for 5 minutes to try to get the pain to stop. It was excruciating. I didn't know if that was bone pain from the tymols or what. I'm in my 9th month of Tymlos and had an extremely high P1NP level (715) and don't get another draw until May.

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Is the pain in both sides?

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@daisylou

Is the pain in both sides?

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High calcium levels disrupt muscle function, causing muscle cramping. High calcium interferes with muscle nerve that control muscle contractions.
Hypercalcemia is a known side effect of Tymlos.

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