My nephrologist wants me to take Jardiance for CKD?

@m1rmiller indeed it is.

@suppiskey2surv Thank you for replying. Your husband and I have some similar issues around CKD.

I am not familiar with the 1+, 2+,3+ terminology. The lab report I get tells me how many mg protein were collected in 24 hours (my least favorite test). Recently I have produced 2500 to 4200 mg. The first time I did the test I made 4400 mg. Normal is below 300 mg.

There are only an estimated 10 idiopathic ITG patients worldwide-found by a concerted search led by a Mayo nephrologist who I now see about every 3 months. (I am reconsidering right now and skipping an appt to try to come to grips with his Jardiance recommendation. Is he "practicing/experimenting" on me? My local nephrologist and hematologist met to try to come up with advice on persisting with visits to Mayo. They said they were fine if I quit going to Mayo but upon meeting them in 2021, neither had heard of ITG. I only have gut feelings to guide me.) An additional 70 ITG patients also have lymphoma and 30 have myeloma. The lymphoma patients are commonly treated with Rituxan and if they respond, the ITG goes away, too. Myeloma patients are often treated with velcade/dexamethasone. If their myeloma responds, then their ITG does, too.

My hematologist could find no evidence of either lymphoma or myeloma but, I think out of caution (and perhaps little else to go one) started treatment with Rituxan. The proteinuria was (on average) unchanged so he switched to velcade/dexamethasone. Proteinura (on average) dropped even though he stopped treatment earlier than planned when I developed (as many velcade patients do) peripheral neuropathy.

From my point of view, the biggest change was that I am still immunocompromised even though treatment stopped in March, 2023. You might have heard that Rituxan decimates the CD20 B cells that respond to viral infections like covid. Velcade goes after plasma cells about which I have found very little except my IgG1 went down and has never reached much above a hair above the low end of normal. The nephrologist (who also has an appointment in hematology) who has published on ITG told me I should wear an N95 when I got into public buildings.

I was so immunocompromised during the time I was taking velcade that an Infectious Disease Specialist said I must have caught covid through my eyes. That week, the only "outing" I did was to walk from the parking ramp at the hospital (there is no street parking or lots within range) to the Cancer Center for my velcade infusion.

This spring I flirted with danger when my husband pressured me into eating in an indoor restaurant. I caught a viral infection that lasted for at least 5 weeks, may have stimulated a relapse of infectious mononucleosis (that I last had at age 15)--I didn't know that was a thing. Weeks later after another indoor restaurant meal (that was more stressful than enjoyable) I caught what I think was a regular cold that "only" bothered me for about 4 weeks. My nose is still drippy and I sneeze more than I used to. I'm glad I can still get free covid test through my insurance. I would have futilely spent enough money to enjoy and nice restaurant meal--if only that were feasible.

But I did not contract Hand, Foot and Mouth Disease from my grandson nor (knock on wood) pinworms--both of which he caught at day care just before we got together in July and again last week. (We live 3 hours apart by plane.)

I can't find any evidence that Jardiance will improve my immune system. I am feeling pretty down about not being able to avoid infection if I go out. I met a friend for the first time in a year (I had met two others since 2019) but asked not to share a meal. I don't feel able to risk more, possibly life threatening side effects (specifically the possibly fatal skin rash) at this point.

@mnsansei

Will try and write a proper response either later today or tomorrow, hun. I was writing one, but lost it to the world of technological glitches. *Ugh.

Was using my smartphone. I hate little screens. Will use my computer later.

Will talk soon!

Hugs to you in the meantime.

🫶

Because my / our story is so complex, I decided to respond to @mnsansei in a private message. But I wanted to attach a photo (admittedly, a little dated, as it's from 2009). Until today, I wasn't able to send PM's or attach photos . . . something I think I could have figured out and done before this . . . BUT . . . this picture, along with all the other blah, blah, blah comments and responses I've sent about my husband's ongoing health issues . . . tells a story of why I've fought so hard for answers in the midst of being told I was too . . . this or that . . . by friends, family, doctors . . . heck, even my husband sometimes. It's been a long, hard, journey through a maze of some pretty incredible, unfortunate circumstances and he (thankfully) is with us today, feeling pretty good and able to do most of what he wants . . . but we have both had to redefine the trust we have in our doctors, here at the local level these days and are ever so grateful for the care he's receiving at MAYO for his kidney challenges.

This moment . . . as sweet as it appears . . . didn't just happen by magic. My daughter's wedding photos had to be filtered to make it appear as if he had a dark tan. It's from, yes, 16 years ago . . . but it's relevant because it's an example of how hard a person has to fight for what they deserve out of life . . . a moment like this one, so precious, could have been lost to placing trust in a system that sometimes just doesn't "get it" . . . riddled with costs and misdiagnoses. He almost died just a week and a half before this special dance . . . and it didn't happen because of "magic" or "fairies". He's alive today, with us . . . sharing more moments like these with our family.

Bottom line . . . "Follow your heart!" It will never let you down.

What stage CKD are you? One thing is for sure, no two people on this site have had the same advice. We all seem to be told differently things at varying times. We all have to be vigilant and ask questions.
Blessings.

What stage CKD are you? One thing is for sure, no two people on this site have had the same advice. We all seem to be told differently things at varying times. We all have to be vigilant and ask questions.
BTW my eGFR ranges between 30-45 for the past two years, I have had one kidney removed and I am on only blood pressure medication. Blessings.

@dougr19 I'm at 3b