Does each relapse cause damage?

• By cgalitski
• Posted October 8, 2008 at 12:48 pm

I want to know the same thing? All ears!!

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• By Beth75
• Posted October 8, 2008 at 12:48 pm

I think there are cases where the early stages of FSGS look like MCD.

However, I had edema for 7 years prior to being dx'd with MCD, so I believe I had MCD for 7 years being that is the side effect. My kidney function is fine except for the MCD and I had been spilling protein for that long.

Can't say that would be the same for everyone.

That is good that he is able to reach remission, I have read sometimes it takes a few tries.

All my best.

Beth

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• By Rileys-parents
• Posted October 8, 2008 at 12:53 pm

Thanks for the info Beth. we are very happy with his response but are afraid that damaged is caused each time even though creatine levels and etc look good in blood samples to show kidneys workiing right now. Is this going to show later as serious damage and it will just hit one day where the damage over takes the function of the kidneys? I hope not.

Mark

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• By FLMom
• Posted October 8, 2008 at 1:44 pm

Hi Mark -

I have been wondering the very same thing myself. Our daughter was diagnosed the end of May with MC and has been spilling 3+ since then. Her blood work has been OK on all levels for kidney function, but I can't help but wonder what is the effect of spilling for this long. Her blood albumin was less <1 for 3 months. The neph added cytoxan about 40 days ago and her albumin has slowly risen to 1.6, but she is still spilling 3+. I am starting to think she will never go into remission. We are hoping to get a biopsy this month - but it sounds like even that may not be conclusive.

Lynette

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• By Rileys-parents
• Posted October 9, 2008 at 12:22 am

Hello Lynette,

I am sorry to hear your daughter was diagnosed with this disease. I will hope and pray she goes into remission soon.

Let me ask you with her Albumin being so low for so long did you get albumin IV to help bring it up? I am surprised that let her go so long if you didn't.

Well I will tell you that they did our biopsy when Riley was on a relapse and it initially came back as FSGS but our neph talked to the tech that did the biopsy and they came to an agreement that since Riley was in relapse that it was probabaly not FSGS due to he was in the middle of a relapse. So hopefully she will go into remission and then that is when i would sugest to do the biopsy from my little expierence.

Yes I am just thinking the kidneys relapse on our kids with this and they spill it has to be doing something to the kidney? I don't have a neph appointment until 11/4 but I am going to ask him and actually I will ask out reg doctor tomorrow becuase I am going there and he is the one that first diagnosed Riley with MCNS so maybe he will know.

I wish the best for you. Please send us a message to let us know how things are going when you can.

Mark

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