@mnsansei
My husband, has a rare kidney disease . . . MGN, hovers between a 1+, 2 to 3+ protein loss in a 24-hour test, having had one Rituximab infusion in 2021 for his kidney disease and was told Farxiga would help but because of the expense, was told Jardiance would provide the same preventative benefits as Farxiga. He opted NOT to take either one because of, yes, similar cost but also because everything carries with it certain types of side effects. That one infusion he had years ago brought his proteinuria down to the 1+ range; so, if anything gets worse, his plan is to ask for another one of those, rather than starting another med on a daily basis.
Every CKD is different, obviously, and that dang infusion brings his white count down, as it's an immunosuppressant, but for him . . . new meds can be a slipperier slope sometimes.
Good luck with your decision!
@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.