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TOPIC: Long-term Macrodantin use

Long-term Macrodantin use 1 month 5 days ago #71734

  • Liz81
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Hello,

I'm sure we all know that as people who have Spina Bifida, there are bladder/kidney problems. So it's an issue for us but I'm wondering if there are medications you take for it? What about Macrodatin? Do you take it? How long have you been taking it?

See, I have a problem here. I take it and have been taking it for about 30 years now. Just recently, my urologist decides to take me off it gradually because according to research, it causes lung disease or damage. I understand their concern but mine is I will get more UTIs and they will be really bad without the Macrodantin. From what I've seen online, the chance of lung disease caused by long-term use of Macrodantin is slim or it's rare. Still, the urologist wants me to do away with it gradually til I no longer take it at all. I really think my chance of getting bad UTIs are much higher than my chance of getting lung disease. I've never had lung or heart problems. So I think the benefits of the Macrodantin outweight the fact that I may get lung disease.

Thoughts? Have you taken the medicine and if so, have you taken it for long? What other ways do you take to prevent or reduce symptoms of UTIs besides staying hydrated and emptying your bladder on a regular basis?

Thanks

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