Kidney problems while taking Tymlos

Posted by bec39 @bec39, Feb 25 5:17pm

Has anyone had kidney issues while taking Tymlos? I was diagnosed with mild Pelviectasis of both kidneys after three months on Tymlos, though I do have a history of kidney stones. I asked my PCP to test both blood and urine for high calcium and urine came back high therefore she ordered a Renal Bilateral Ultrasound. I understand from this wonderful forum that high calcium in both blood/urine can be serious, so I don’t understand why I got such pushback from my Dr. about testing.

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Maybe because you should have had kidney function testing before starting Tymlos.

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Tymlos raises calcium levels for a few hours so make sure you test blood and urine before Tymlos.

It also lowers blood pressure for an hour or two which can affect testing for kidney filtration rates.

I would make sure to have a Cystatin C rather than a creatinine based GFR if you can: it is more stable.

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@windyshores

Tymlos raises calcium levels for a few hours so make sure you test blood and urine before Tymlos.

It also lowers blood pressure for an hour or two which can affect testing for kidney filtration rates.

I would make sure to have a Cystatin C rather than a creatinine based GFR if you can: it is more stable.

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Wow, I didn’t know that Tymlos can affect test results - I now feel like my results are not accurate. Thank you for pointing that out, I wish my Dr. had…

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@gently

Maybe because you should have had kidney function testing before starting Tymlos.

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You could be right. I feel like my PCP just wanted to put me on a drug and move on. She disagreed with my decision to start Tymlos at a low dose and ramp up slowly but insists on managing my osteoporosis. I will me moving out of state later this year which is the only reason I haven’t found a new doctor.

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Try full dose first. I tried full and half dose before deciding to ramp up from a lower dose. I did not tell my doctor about lowering the dose until after the fact and as I have written, he makes ramping up from a low dose part of his practice now for those who have trouble getting on.

I just did one out of two shots of Evenity too and told my doc after the fact. Because two were hard for me to tolerate.

These decisions need to be based on our reactions, not our anxiety, I think. Most people can tolerate these drugs just fine and it would be a shame to miss out on weeks of therapy while doing a lower dose unnecessarily. Also if you do a lower dose, refrigerate the pen so it lasts longer!

Docs are reluctant to nitially prescribe anything not proven in studies but we have a right to decline or adjust. But we should inform our docs for sure. And I guess they could discharge us. You have a better case w/doc if you try full dose and then adjust only if needed.

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@windyshores

Try full dose first. I tried full and half dose before deciding to ramp up from a lower dose. I did not tell my doctor about lowering the dose until after the fact and as I have written, he makes ramping up from a low dose part of his practice now for those who have trouble getting on.

I just did one out of two shots of Evenity too and told my doc after the fact. Because two were hard for me to tolerate.

These decisions need to be based on our reactions, not our anxiety, I think. Most people can tolerate these drugs just fine and it would be a shame to miss out on weeks of therapy while doing a lower dose unnecessarily. Also if you do a lower dose, refrigerate the pen so it lasts longer!

Docs are reluctant to nitially prescribe anything not proven in studies but we have a right to decline or adjust. But we should inform our docs for sure. And I guess they could discharge us. You have a better case w/doc if you try full dose and then adjust only if needed.

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I was very anxious about starting Tymlos so I did start low and work up to the full dose. And as of now, I’ve had no side effects until the Pelviectasis diagnosis. And just today my doc ordered another Ultrasound so we’ll see what that shows.
Regarding Evenity, I thought those shots were administered by a doctor, not self administered? That would be perfect. I thought the same about only one shot to see how I reacted before moving to two.

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@bec39

I was very anxious about starting Tymlos so I did start low and work up to the full dose. And as of now, I’ve had no side effects until the Pelviectasis diagnosis. And just today my doc ordered another Ultrasound so we’ll see what that shows.
Regarding Evenity, I thought those shots were administered by a doctor, not self administered? That would be perfect. I thought the same about only one shot to see how I reacted before moving to two.

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I still had side effects with Tymlos. Ramping up from a low dose to a higher one made it possible for me to take it, but I still had some side effects that were tolerable and short-lived.

A nurse in the doctor's office does Evenity shots. I did the full dose the first time and didn't tolerate it well. When I went in the second time I wasn't sure what I was going to do. I saw an allergist beforehand who wanted a pause between shots. But the nurse didn't want to wait very long. So I just declined the second shot. I let me MD know.

I have never done a partial dose of these meds until I first tried full dose and reacted badly. I am very sensitive and my docs know that. Now they will do a partial, low dose of Reclast first before I do the full one!

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@windyshores

I still had side effects with Tymlos. Ramping up from a low dose to a higher one made it possible for me to take it, but I still had some side effects that were tolerable and short-lived.

A nurse in the doctor's office does Evenity shots. I did the full dose the first time and didn't tolerate it well. When I went in the second time I wasn't sure what I was going to do. I saw an allergist beforehand who wanted a pause between shots. But the nurse didn't want to wait very long. So I just declined the second shot. I let me MD know.

I have never done a partial dose of these meds until I first tried full dose and reacted badly. I am very sensitive and my docs know that. Now they will do a partial, low dose of Reclast first before I do the full one!

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I get your logic to try a full dose first and adjust based on how it goes…I wish I could do that but these drugs scare me!
I need to figure out my path after Tymlos, which will be here before you know it. Thanks for giving me the confidence to plead my case, you’re a great inspiration.

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@bec39 I just feel responsible for starting posts about starting at a low dose and ramping up. I didn't mean to influence people who don't need to do this. People are staying at very low doses with the idea of avoiding side effects entirely. That is not realistic or helpful.

I am not sure anxiety is going to convince docs to okay starting at a low dose, but maybe. When a reaction to full dose makes it impossible to take a medicine, then a doc will probably work with you to try a lower dose with the idea of moving up to a dose that is maximum benefit and tolerable.

We have the option to just do this ourselves but I recommend telling a doc about it afterwards. If you have the pen, do one day of two clicks, one day of three, and one day of 4 and see how you do. You can backtrack if need be, or move ahead. But refrigerate it so the pen lasts. Most people do fine with a full dose. I am very sensitive to meds and have a lot of other health issues.

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windyshores, you are responsible! Cheers to you.

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