Jardiance for stage 3a CKD or Acute Kidney Injury (AKI)

Hi,

I just found this thread which I think could be helpful for me as I make a decision about starting Jardiance. I have a very rare CKD--perhaps one of ten people in the world with idiopathic ITG and one of about 100 with one of three variants of the disease (the others have either lymphoma (70%) or myeloma (30%). I was diagnosed in 2021 by a pathologist in the lab in the Nephrology and Hypertension Dept. at Mayo in Rochester after the pathologists at Healthpartners and the Hennepin County Hospital passed my biopsy sample to her. Because she publishes on ITG, I made contact with a nephrologist/hematologist at Mayo who had been a co-author on a paper. He is now part of my care team.

After two series of treatments, the first was judged to be ineffective, in 2021-2023, in October 2024, the team said I was likely in remission. That is to say, my symptoms and tests are not worsening. My eGFR is 69 but I excrete 2-3g of protein when I do 24 hour urine collections (most recently this week). The amount varies some which my local hematologist and nephrologist watch but have not provided instructions designed to alter.

I have a quarterly appt with the Mayo doctor next week. In April he ended my visit with an announcement that he wants me to start Farxiga via a prescription to be written by my local nephrologist. When I asked about side effects, I found myself wondering if it was worth all the new side effects. He said there are two that are the most common. The one I disliked hearing about the most is the sometimes fatal skin infections. I can't find info about how common those are. (My insurance doesn't include Farxiga in the formulary.)

The next most likely to be problematic side effect is the increased frequency of urination. I already spend quite lot of time in the bathroom in part because since my (infected, no stones) gall bladder was removed in 1977, I, like others I have met who no longer have a gall bladder, usually have 6 or 7 bowel movements a day. I know where all the public restrooms at the stores, parks, museums, concert halls, etc. are because I always need one when I leave home. It's hard to imagine that problem being exacerbated. Until April, my nephrologist limited liquid intake (I only drink water and iced tea) to 30 oz a day. I have only recently been permitted, with a spate of hotter than usual weather this summer), increased that to make sure I am not thirsty.

I have not started Jardiance (with the "permission" of my local nephrologist) because my son and his family had planned a week long trip to visit us. They live 3 hours away by plane. Their youngest has never been to visit us and the older one was 18 months old when she was here. She asked to come to MN. I wanted to be able to participate in the outings (parks, zoos, etc.) with them. They left us two weeks ago. My local nephrologist said I could skip Jardiance when I wanted to but it didn't make sense to me to be starting new med with an on again/off again dosing schedule so I am waiting to revisit this topic with the Mayo doctor this week.

I am hoping to learn of others experience with Jardiance, especially wrt the two common side effects.

Thanks in advance.