1. < Bones, Joints & Muscles

IV pamidronate and IV ibandronate

Posted by JK @contentandwell, Jan 30, 2023

I have just completed 23 months of Tymlos and now need to use a different drug to maintain my gains. I had assumed I would use Reclast but then I discovered that it could affect my already compromised kidneys. I cannot take oral bisphosphonate due to having Barrett's Esophagus.

At one point, a while ago when I felt hesitant to take Reclast since it stays in your system for so long, my endocrinologist mentioned the drugs above. Has anyone been on these and if so how did you do? Ibandronate is actually a different form of Boniva and in the side effects it does mention kidneys so I suspect that may not be appropriate for me either.

Any info anyone has on these would be appreciated. I have googled to read about side effects, etc., but nothing beats real-life experiences.
Thank you.
JK

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windyshores | @windyshores | Jan 30, 2023

I am in the same position @contentandwell. Though I will have only done 17 months of Tymlos. Would you mind sharing you GFR for kidney function? You could do it privately if you prefer. Mine is 53. Third stage kidney failure is 30-59. Wondering whether that is also too low for Reclast.

Have you considered following up with Evenity? Also the time limit has been lifted for Forteo, I believe- but not Tymlos yet.

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2 replies
JK | @contentandwell | Jan 31, 2023
In reply to @windyshores "I am in the same position @contentandwell. Though I will have only done 17 months of..." + (show)
@windyshores

I am in the same position @contentandwell. Though I will have only done 17 months of Tymlos. Would you mind sharing you GFR for kidney function? You could do it privately if you prefer. Mine is 53. Third stage kidney failure is 30-59. Wondering whether that is also too low for Reclast.

Have you considered following up with Evenity? Also the time limit has been lifted for Forteo, I believe- but not Tymlos yet.

Jump to this post

@windyshores My EGFR is 49. Over the last 6 months it has ranged from 45 to 55. I am post-transplant (liver) so my transplant team keeps a very watchful eye on me, lab work every two months, etc.

Evenity has some side effects that indicate heart problems and/or stroke. I personally have not had heart problems that I am aware of but I do have an appointment with a cardiologist coming up in April to get some answers and if needed, to be proactive. Literally everyone in my family except for two people has died from heart problems (that's at least 13 people) so it's in my genes and that makes me very leery to take Evenity.

I had no problems with Tymlos initially but over time my legs started to ache constantly and I don't want to have to deal with that again. I believe Tymlos has now also been approved for longer than two years.

I see my endo tomorrow so I am looking forward to hearing what she suggests for the next step. She thought my osteoporosis was probably related to my being on prednisone but I am no longer on prednisone so I want to ask her about that too. If I no longer take prednisone does that indicate that my osteoporosis will not get worse if I watch my diet and exercise?
JK

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windyshores | @windyshores | Jan 31, 2023

@contentandwell I also have had a GFR of 49, and the highest was 55. Hmmm.

I assume you have read my story but once again, I started Tymlos at two clicks out of 8 and worked up. For a good long time I only did 6 clicks and my doc was happy with that. For a few months I did 7 and the last month I have done the full 8 clicks with more side effects. If I were going to be on it for awhile I would go back down but am almost finished so I am going out with a blast!

Anyway, you could try it at just 6 clicks.

REPLY
becauseofhim56 | @becauseofhim56 | Jan 31, 2023
In reply to @windyshores "I am in the same position @contentandwell. Though I will have only done 17 months of..." + (show)
@windyshores

I am in the same position @contentandwell. Though I will have only done 17 months of Tymlos. Would you mind sharing you GFR for kidney function? You could do it privately if you prefer. Mine is 53. Third stage kidney failure is 30-59. Wondering whether that is also too low for Reclast.

Have you considered following up with Evenity? Also the time limit has been lifted for Forteo, I believe- but not Tymlos yet.

Jump to this post

Could I ask why you are prescribed Pamidronate for your CKD?? I took this medicine 24 years ago for several years and I paid for it later and still having problems from it. I do have CKD and just about everything else also from taking medications yearss ago.

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1 reply
windyshores | @windyshores | Feb 1, 2023
In reply to @becauseofhim56 "Could I ask why you are prescribed Pamidronate for your CKD?? I took this medicine 24..." + (show)
@becauseofhim56

Could I ask why you are prescribed Pamidronate for your CKD?? I took this medicine 24 years ago for several years and I paid for it later and still having problems from it. I do have CKD and just about everything else also from taking medications yearss ago.

Jump to this post

@becauseofhim56 I do not take pamidronate. I do not do any medications for a GFR in the high 40's/50's.

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