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@dks

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.

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Replies to "Hi Lucy. I'm so sorry you're having such a horrible time getting things calmed down. Last..."

Thank you... you were able to paint a good picture of how we must do our own research! I'm glad you found a combo that works. I had an appt yesterday with my Urogynocoloist. I was nervous mentioning that as a result of watching several You-Tube videos, I had started myself on 10mg of amitriptyline (I had in medicine cabinet, but never used for diabetic neuropathy pain). My doctor responded positively, saying she recommends 25mg of amitriptyline for BPS/IC and it works for many patients. After 6 days on this drug, my bladder pain level decreased to a level 4-5. It feels good to be able to walk without level 7-8 pain in my pelvic region. I'm starting the 25 mg tonight.
I'm going to stay on the D-Mannose. My pain has definitely improved this week. Hope it continues!