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Just diagnosed with Bladder Pain Syndrome / Interstitial Cystitis
Kidney & Bladder | Last Active: Jun 15, 2023 | Replies (42)Comment receiving replies
@dks Thank you for sharing your story, which sounds very similar to mine. A couple years ago, I had been on methenamine for about one year. Seemed to work and then it didn't, so I went off of it and onto a series of different lower dose antibiotics over the next several years, which didn't stop the frequent UTI's either. I went back on Methenamine a few months ago when I started my new doctor. I stopped a couple of weeks ago, because I had a sequence of UTI in six weeks in spite of taking the methenamine.... so, it wasn't working. I am taking D-Mannose 1,000 mg 2x a day. It's only been a week, so not sure what it does yet. What really concerns me is your mention of Stage Three Chronic Kidney Disease.... I have not had my Kidney lab results reviewed and I will ask that they be done at my upcoming appointment on Friday. What made them look at your labs? Were you running a fever? Had back pain? Thank you.
Replies to "@dks Thank you for sharing your story, which sounds very similar to mine. A couple years..."
I'm having kidney surgery on March 2nd. And I'm nervous about what they will find.
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Hi Lucy. I'm so sorry you're having such a horrible time getting things calmed down. Last year, I noticed my eGFR had been decreasing over the past 4 years and my Primary kept telling me I probably was drinking enough water and was just dehydrated. So, I did a little research on methamine and found studies had been done showing that the drug should be used "with caution" on patients with kidney problems. I then looked at my lab results before my use of methenamine, as well as during the 3.5 years I was one it. I could definitely have been wrong about my concern but when I spoke with my Primary and my Urology PA, they both did some research on their own and concurred that it might be prudent to lower the dosage (if I wasn't ok with stopping it altogether - which I wasn't). I have had such great results with my IC problem by using the methenamine, together with the D-Mannose, that I think my mind couldn't wrap around the possibility that I might start having the bladder infections so frequently again (I haven't had one since July 2019). So, we came up with a plan to cut down to only one methenamine and one D-Mannose per day. I did fine, so we then cut down to only a half methenamine at night and one D-Mannose in the morning. I'm still doing fine. However, I still have trepidation about stopping the methenamine altogether. I know it's probably just a placebo at this point but it's still a security blanket for me. I sure hope you can find a regimen that will help you. Take care.