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“minimal change disease”?

Posted by jrkbls @jrkbls, Jan 22 5:59am

Has anyone had any experiences with minimal change disease? I have this occurring occasionally since 2018.
Severe swelling in legs, stomach areas.
My doctor puts me on Prednisone and it goes away only to return in 6 to 8 months.
Is this happening because my immune system is fighting something?
My cancer (esophageal) is in remission.
Cancer diagnosed 6/22, chemotherapy and radiation treatments and declared cancer in remission 11/22. I have been having MRI’s, CT scans, esophagus scans on a regular basis.

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casey1329 | @casey1329 | Jan 22 7:08am

My husband had swelling in his legs. The doctor said it was blood clots and put him on Elequis for a while and it went away...good luck !

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Jan 22 9:38am

Hello @jrkbls. I'd like to invite @rkndvm and @codered032 to this discussion as they have talked extensively about their experiences with minimal change disease on Mayo Clinic Connect.

It must be quite frustrating to have to deal with this on what seems to be a routine schedule of events. Has your provider discussed why the Prednisone seems to work in the short term but always lead to a return of your symptoms after a few months have passed?

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1 reply
jrkbls | @jrkbls | Jan 22 9:52am
In reply to @JustinMcClanahan "Hello @jrkbls. I'd like to invite @rkndvm and @codered032 to this discussion as they have talked..." + (show)
@JustinMcClanahan

Hello @jrkbls. I'd like to invite @rkndvm and @codered032 to this discussion as they have talked extensively about their experiences with minimal change disease on Mayo Clinic Connect.

It must be quite frustrating to have to deal with this on what seems to be a routine schedule of events. Has your provider discussed why the Prednisone seems to work in the short term but always lead to a return of your symptoms after a few months have passed?

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Yes, it is very frustrating.
Prednisone shuts down the immune system. He reduces the 60 mg Prednisone very slowly and carefully. It seems that when I am reduced to 5mg the minimal change disease returns.
I really don’t think he knows why my MCD keeps returning .
I would welcome any suggestions.

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