@steveutnv

I am one of ten people in the world with my version of CKD, called idiopathic immunotactoid glomerulopathy. I am not diabetic but my nephrologists (one at our local HMO and one at the Mayo Clinic (who has actually heard of ITG) are recommending Jardiance to address my high proteinuria (varies from 2 g to 5 grams total) which is a "feature" of ITG that all approximately 100 known ITG patients exhibit. (Those others have blood cancers that I am thought not to have--hence the "idiopathic" modifier on "my" ITG.) I usually take their advice after asking about the side effects I should pay attention to and reading up on new meds. The Mayo doctor led with fatal skin infections and mentioned more trips to the bathroom. I should mention that I am prone getting side effects, especially the ones that scare me.

That was last summer just before our son and his family (kids were 3 and 1 yr old) were to arrive to visit us. We hadn't seen them in months and had a series of activities planned for them--a trip to the family cabin, visiting the local zoo (since the kids had never been to a zoo) and the like. The last two things I wanted to happen were a trip to the emergency room to a rural hospital for a fatal skin infection and/or spending all my time on outings with the grandkids walking to and from restrooms. So I delayed the start with my local nephrologist's blessing and still haven't started.

In the meantime, my swelling and bp were up a bit last month so my local nephrologist re-started me on spironolactone which I'd stopped taking because of debilitating dizzyness from what he thought was too low bp. I was only taking half of the smallest available tablet. Well, I was not surprised to be dizzy again so, because one is supposed to wean from spironolactone, I called the after hours nurse when I was unable to reach anyone at the clinic who was willing to speak to my nephrologist. (Messaging him directly didn't work either--I think he was doing his periodic shift at the hospital.) She contacted the on-call nephrologist who helped me stop spironolactone. It took a few days to regain my equilibrium. It was a bit scary because I was home alone for almost a week. I haven't used walking aids in over a year so they're in storage in the basement. It didn't seem safe to go down there when I was so dizzy. I supposed I could have slid down the steps one at a time on my bottom. I compromised by holding onto tables, bookcases, chairs, hugging walls etc. to get around the house.

The after hours nurse was able to reach my HMO nephrologist who, once again recommended Jardiance but reiterated that my BP might go down. I get dizzy if it drops below 110/60 and it is hovering about 115/65. We compromised on a new schedule to restart Jardiance after next week's trip to go visit our son's family for a combined birthday for the now 2 year old, a late Thanksgiving, and an early Christmas.

I thought I'd ask others like you for their experience with bp on Jardiance. BTW, I am thought to be in remission from ITG since October 2024.

Thanks for your two cents.