My nephrologist wants me to take Jardiance for CKD?

@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.

@kenzie20 Hi, the side effects from medication is horrid, sometimes worse than the condition which is why when I developed gout I was determined not to take medication for it. I researched and found an ancient Chinese remedy. It is Black Sour Cherries. It really works. Unfortunately, sour cherries where I live are only obtainable in tins. However I have been eating blueberries with my breakfast every morning and have not had an attack for two years. My 3B ckd is apparently caused by the anti- inflammatory drug I have been taking for a few years. I tried not taking it but the pain from Rheumatism was just too much for me. I am hoping the recommended Kidney diet will stop my kidney condition deteriorating. My BP sometimes drops to 90/52 which leaves me feeling awful, and no doctor has been able to find out why it drops so low. There is no medication here for low blood pressure so I take a few drops of a Homeopathic medication which sometimes helps. At least it has no side effects.

I started 12.5 mg Jardiance (split 25 mg pills) 5 mo ago, no side effects other than my resting BP dropping from an average 120/70 to 104/73. Cost is $80 for 3 mo with Medicare Advantage. My stage 3b CKD resulted from scarring from long covid and norovirus in 12/23. I don't have high BP, diabetes, heart disease, or overweight, but do have celiac and colitis (so already used to a restrictive diet). I eat cranberries in case that helps prevent bacteria from adhereing to urethra walls (UTI) and keep clean to discourage yeast infections.
Regarding the Black Sour Cherries as treatment for CKD, cherries are low in sodium and phosphorous, but high dosing on anything is not recommended. Exercise, hydration and kidney diets are important, particularly when CKD progresses. https://pmc.ncbi.nlm.nih.gov/articles/PMC6620216/