Need to know more about minimal change disease please?I'm a 30 year old female and I've been showing every symptom for minimal change disease from swelling in my legs to the protein in my urine. I've already seen a renal specialist and she says she's almost 100% sure that's what I have. I'm scheduled for a biopsy in a couple of weeks to make sure that's what it is. My question is this, what happens if you leave minimal change disease untreated? Do you die? Do your kidneys end up failing? I know the websites I've visited mention it can lead to nephrotic syndrome, but that's about it. I'm only asking because I've been researching the disease online and I keep reading how almost everyone that writes about this disease relapses and has all these horrible side effects from the medications. I think I'd almost rather deal with the swelling in my legs then have to deal with everything I'll have to deal with just to MAYBE get better. I'm really scared and nervous and don't have anyone in my family who understands what I'm going through. Someone please help. Thanks:)
Posted by nursienurse
Even in adults, Minimal Change Disease typically has a favorable prognosis. Over 90% of patients will respond to oral steroids, with most of these having a complete remission. However, more than 50% of the adults who go into remission will relapse at some point in their lives, and for these patients either another course of steroids or another form of chemotherapy entirely may be necessary.
Although it is rare for Minimal Change Disease itself to lead to End Stage Renal Disease, some patients with MCD eventually develop another disease called Focal Segmental Glomerulosclerosis (FSGS). FSGS is generally seen as a more aggressive disease, with less treatment options and more of a tendency towards eventual renal failure.
This is what I found. I have taken prednisone, a steroid several times,
and haven't experienced any bad side effects. I did have increased appetite and insomnia but these go away as they lower the dosage.
Most chemo-therapies have improved and maybe by the time you'll need them they will improve more. Remember new drugs and treatments become available all the time and there are meds that can minimize side effects. The prognosis looks positive so try to go into your treatment with a positive attitude. Generally people who have a good outlook have a better recovery rate.
Of course you are worried and that is normal. Even knowing that the prognosis is good, I'd be worried, too. It's human nature to worry about our health. Your family may be having a hard time realizing you are ill.
It may be that you are only 30 so they think you can't have anything seriously wrong because you are so young. Take someone with you when you go to the MD next time or when you have your biopsy so they can hear what the Md says.
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