Kidney disease: Figuring out minimal change disease (MCD)

My grand daughter is 16 and I can't imagine her going through all that you have struggled with! Actually my kidneys are doing ok. Although I have multiple cysts on both kidneys and liver, and angiomyolipomas also. They are not growing very fast and everything seems stable and benign. I have (probably) a collagen disease that caused this but where it really attacks our family is in the weakened structure of the blood vessels, especially the aorta and in the brain. Both my brother and my father died of sudden aortic dissections or blowouts. The ERs totally misdiagnosed them both and missed the chance for surgical repair.
Then my second child, a son, died of a brain hemorrhage at 19 days old, probably also related to the collagen defect. My third, another son, was born with almost no blood platelets, and could have died from hemorrhage also except for several miracles of the right Dr, the right place and time. Ted is fine now and is 35!!! And my first, Christie is healthy and the mother of my only grand daughter who is the joy of my life. She is the one who is 16--Kira Nicole.
I have to turn the light out now, I am being told (See, people keep telling you what to do, no matter how old you are! lol )

May God continue to give you peace and joy

"Grandma" Judy

Hello I am new to social media so please bear with me while I learn to navigate the internet. I am now 69yo. Approximately 2yrs ago during my annual physical I was dx with minimal change disease. I am a retired RN, but had never heard of MCD. I have always been healthy and other vitamin supplement was on no medications. I immediately started to research MCD but to date not much information related to adult onset. I was evacuated by a neurologist and dx via a rental biopsy. I was treated per protocol with high doses of prednisone and told everything would be ok. Unfortunately after almost a year of prednisone my condition has not changed. The side effects of prednisone were unbearable. Six months ago I was started on Tacrolimus. I question if my condition is being properly managed. I learned through research that I needed to have random Tacrolimus levels done. I became my advocate having to request blood levels and follow-up medical appointments as well as medication adjustments. I am at a lost as to where to go for proper treatment. I am other wise healthy. I am open to suggestions as adult onset MCD has limited internet information. Thank you for any support.

@codered032 Welcome to Mayo Clinic Connect! We are fellow patients, caregivers, and family members, who share our experiences and strength with others on their own health journeys.

I had not heard of minimal change disease before, so had to look it up, It appears to fall into the same categories as other glomeruli kidney diseases, most notably FSGS. Here is an article from nephpcure.org to give you information: https://nephcure.org/livingwithkidneydisease/understanding-glomerular-disease/understanding-minimal-change-disease/. Also, here is an article from Medline Plus https://medlineplus.gov/ency/article/000496.htm

As a fellow kidney disease patient, I know it can be quite the challenge to find out information about a specific condition. I also have a glomeruli involved situation, caused by an ultra-rare autoimmune disease. While I am not able to do a transplant, my treatment seems to follow the normal guidelines of reducing stress, getting exercise, following a kidney friendly diet, no NSAIDS except acetaminophen, no smoking.

Have you looked at past lifestyle choices to figure out if any of them may have been a contributing factor to your current diagnosis? If you are questioning the management of your case, have you considered looking into a large teaching hospital or one the the Mayo Clinic campuses?
Ginger

Ginger, thank you for sharing. I have always paid close attention to my health. From the information that I have read, I did have a massive allergic reaction of unknown origin and I was treated with Celebrex for over a year for osteoarthritis. It appears that either one may have contributed to my diagnosis. After a year of being treated with Prednisone, 4month ago I was started on Tacrolimus ($400+ A month)! I am not sure how well it is working because I have to keep reminding my nephrologist to order my blood levels and I am not sure what my levels should be. Thank you for the information. My next appointment is in November. If things have not changed I will certainly explore a visit to Mayo!

I am a retired veterinarian diagnosed with MCD in January 2020 by renal biopsy. I too lived a healthy 65 years prior to diagnosis. My family has immune-mediated disease and I believe NS MCD has an autoimmune component. After confirmed diagnosis, I took 55mg pred for 4 months and my urine Pr/Cr dropped from 21 to 3. My nephrologist started a slow wean and my numbers went back up so returned to 50mg pred. Finally weaned off pred the end of September 2020. I had 4 months of remission before the foamy urine recurred in Feb 2021. I have tried a conservative dose of pred initially this round, but I am currently seeing swollen ankles and legs so back on 50mg pred daily, atorvastatin for elevated cholesterol, and Lisinopril for hypertension and proteinuria. My panels for underlying disease are normal. As soon as the pred hopefully lowers my urine Pr/Cr this time, my neph and I will decide between starting tacrolimus or mycophenolate, another immunosuppressive drug option in MCD. I need a DEXA scan because of osteoporosis and bone loss associated with long-term steroid use. I plan to get a second opinion with Mayo Clinic in MN. They are a top team regarding glomerular disease and are conducting research to determine underlying cause/pathology/bio markers.
Up to Date is an on/line resource for physicians. I found it researching my Mother’s lymphoma. If you have any friends who are physicians, you may be able to get them to copy the featured Adult Nephrotic Syndrome MCD. Ask your nephrologist about the article. It is such a good reference for me.

Thank you for sharing

Your experience with MCD appears to mimic my condition. Are you treating with a Mayo physician? If so how can I arrange for a second opinion at Mayo Clinic?

Hi codered, You can self-refer and request an appointment yourself at Mayo Clinic. Mayo Clinic generally doesn't require a doctor's referral. But your insurance might. It's a good idea to check with your insurance company about coverage requirements. If you need a referral, we can help you with this process.

Even if a doctor's referral isn't required, getting one can help Mayo Clinic better determine what care you need. Here's how to get started: http://mayocl.in/1mtmR63

I am currently under my local Nephrologist’s care, but plan to request a referral appointment with Dr Fervenza at Mayo Clinic at my upcoming appointment.

Thank you for your reply. How did you find this Dr? I live in Cincinnati, Oh. I don’t know the name of any dr at Mayo.