Anyone here with Immunotactoid Glomerulopathy (ITG)?

@mnsansei I hope you get some responses to this soon. This one is not in my wheel house. My CKD is due to diabetes and some hypertension at one time. But as we say in Mayo Clinic Connect “You are not alone”. Will you keep us posted on how you are doing and what you learn about this?

Thank you for the moral support.

I was diagnosed in 2021 after being referred to nephrology by my PCP for rising creatinine. (I had developed high BP years earlier but I attributed that to genetics since both parent were on BP lowering meds.) I had innumerable tests but the diagnosis was made via biopsy. The lab at the HMO I use in St. Paul sent my sample to the Hennepin County Hospital in Minneapolis which, in turn, sent it to the Nephrology and Hypertension Department at Mayo in Rochester. My nephrologist sent me a copy of the Mayo patholgist's report as soon as he received it and referred me to the Cancer Center. (ITG is not considered cancer but since the vast majority of ITG patients have a blood cancer, too, I guess it was was the logical referral.) Both that nephrologist and the hematologist I see told me at my initial appointments after the diagnosis, that they had never heard of ITG, which was, naturally, disconcerting. That's when I got busy using the college library (where I had taught).

I think the hematologist probably wanted to rule out lymphoma and myeloma (one of which almost all ITG patients have) so he started with Rituxan. I was watched for about 7 months. During that time, I found a nephrologist at Mayo who had published on ITG with the Mayo pathologist who made the diagnosis. It took some effort but I was eventually able to convince the schedulers that I really wanted to see that nephrologist because of his expertise.

The Mayo nephrologist decided that 7 months of no improvement in my symptoms was long enough. The HMO hematologist opted to try a myeloma treatment (since about 30% of ITG patients have myeloma), velcade and dexamethasone. It was a terrible experience which overlapped with 22 days of a covid infection. I couldn't believe my eyes when I reported that I'd finally gotten a negative home covid test. Less than a week later, velcade treatments were resumed. Those ended when I developed peripheral neuropathy. It was such a relief to have that ordeal end. Most weeks (treatments were weekly), the dex made it impossible for me to sleep for 3-5 days. On day 8, I was given more velcade/dex. At the end, I was pretty well spent.

I am still immunocompromised from those treatments (which ended in Feb. 2023).

Fast forward two years--my doctors finally wondered out loud if I was in remission. A year later, my test results started getting worse. I have appointments with them every 3 months with the next ones starting next week. Labs are on Monday. I dread seeing the results which might very well mean more treatment based on anti-myeloma meds. Another ruined summer. Sigh...

(An added complication, likely unrelated: I was diagnosed with gout (which I recently learned is side effect of rituxan infusions AND of velcade treatments) which mom had. I had a scary episode at breakfast one morning when, because of excruciating pain I had when I bent over to pick up something I had just dropped while sitting, I was unable to move. The pain lasted long enough that I thought I'd still be bent over when my husband returned from an out of town trip three days later. I picked up a smart watch on ebay that day so I can make phone calls without needing a phone. A year later, I had bilateral total hip replacement. It took another year and a half to determine that my recovery from those surgeries was hampered by pseudogout. It is disheartening to think about more ITG treatments after three years of not feeling well.)