Should we have a biopsy?

• By ChiCubs7
• Posted June 20, 2008 at 4:56 am

I had a biopsy immediately but I was 21 at the time. I was also told I might have another biopsy if the treatment for my minimal change disease didn't work (this was 9 months later), but it did and there was no need for another biopsy. I was never on chlorambucil.

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• By johnh
• Posted June 20, 2008 at 5:55 am

HH:

I'm a relapsing adult. And I am able to get to 4 month remissions. I talked to two different nephrologists about chlorambucil (aka Leukeran) and the difference in their perspectives helped me make a decision not to use that medicine. One of the nerphrologist (I am still her patient) questioned whether there is enough data to really support its effecacy. So I decided it was not worth the risk. The reason we were looking at chlorambucil is that I had already gone through cyclophosphamide (aka Cytoxan) which was successful for me in sustaining a 4 year remission. Which is such a long time that I thought I was cured. I was pushing for another cure in a kind of consumerist way. Living with prednisone is like a family relationship with good things and bad things and because it is family you can't really ever get away from the person. This might be a stupid metaphor. But as an adult I have to do these head things to just accept my situation, life's imperfections, crisis etc. There are tons of complaints about prednisone in these discussions and the reality is that it is what saves many of us. It must have been horrible in the days before it was invented. Hard to imagine living with untreated Nephrotic Syndrome. I am saying all of this because the alternative to taking another imunospressant drug is to stay the course with prednisone which is not really very sexy. Actually a little depressing and if you make that choice you need to be able to see you way through this too. My personality is such that I want to push ahead and take risks, this is what I do in other parts of my life. It is so hard for me to take the conservative approach to my treatment. But I think I am ultimately better to err on the side of caution.

I hope this helps you with your difficult decision. Keep us posted.

John

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• By duker
• Posted June 20, 2008 at 10:33 am

I know how difficult it must be to make this decision. I am like John H in a way - I needed to know what we were battling against. My 6 year old presented at 2.5 yrs and b/c of very serious presentation they actually biopsied her about 2 months into it - again a different ordeal from yours but we needed to know what she had - it was MCNS w/mesangial proliferation.

after 1.5 years on cyclosporine/pred she started relapsing alot again. another biopsy showed the exact same thing. no scarring.

she has proven to be a very difficult case and b/c over the last 2 years she cant still retain much of remission , the next line of meds are very serious (if you can believe that!). she has proven steroid dependent and the pred is destroying her bones. they have suggested removal of her kidneys (even though GFR is fine and creat is .2!) b/c the steroid dependency is hurting her so much. BUT the reason I bring this up is that I told them that I would NOT allow them to remove these "good" working organs w/o a biopsy first! so this will be her 3rd. if it confirms unchanged from the last 2 they MUST give her more time and we will proceed with rituximab. if it shows FSGS, then we may have to really entertain nephrectomy and PD.... transplant.

Although a biopsy is still an operation and requires anesthesia - in our situation, it is a no - brainer. she will have her 3rd biopsy to tell us what we are dealing with. THere is always a chance of a sampling error (not getting the part of kidney that is scarred, but it is worth the risk for us).

I have read that complications with kidney biopsies are very rare, so the benefits outweighed the risks for us. Really, the most difficult part is waiting the 2 weeks for the results and having your heart in your mouth every time the phone rang around the time you knew the docs would call!

God Bless!

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• By AmosB
• Posted June 20, 2008 at 11:34 pm

HH,
After our daughter was diagnosed (MCNS) we had to push for a biopsy. She had gone through the pred protocol, no change in protein leakage. We tried the chlorambucil with the pred, no change. We started pulse steroids, no change, and with a second opinion in hand (suggesting a biopsy) we pushed for the biopsy. It showed FSGS. She is steroid resistant so no wonder it wasn't working!!!

It still took her a year or so to respond to Cyclosporine and now the question is...should we biopsy again? We know the cyclo maybe hurting her kidney's but will we change the medicine? No!! We know what she has (FSGS) and where she is at in her treatment.

Would we have pushed for a biopsy in the beginning again!! Yes, she bounced back so nice. The only challenge was it was hard trying to get the 2.5 year old to stay in bed afterwards...

Good luck with your choices and decisions for ours out weight the parents next door.....
A

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• By 2007concerned
• Posted June 21, 2008 at 6:58 am

Hi - Our daughter was also diagnosed with Nephorotic Syndrome she was almost 25 months at the time. She was also steroid-resistant. At 26.5 months she had a biopsy... the docs felt it was the only way to know what they were dealing with at that point. Collapsing FSGS was the result. They tried cyclosporine for a day or two and things did not go well... Wow, I actually forget what they tried next... something a step down from that. It made no improvement over several months and eventually they switched us to Prograf. So far the combo of meds has been working.

Good luck to you. Ours was an open biopsy, so at least having an answer meant we knew what we were dealing with and what drugs were even a possibility.

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• By minnie
• Posted June 21, 2008 at 8:28 am

Hello,
Our daughter was dx'ed one year ago this week when she was 2. It is assumed she has MCNS also, but we don't have a biopsy to confirm it. It seems as if every doctor has there own way of looking and treating this disease.

We just saw our neph this week and he's decided to leave my daughter on pred. She's been on pred for a year now (so I guess she's steroid dependant). Every time we've tried to wean her off, she relapses. So we've finally weaned her to a maitenance dose and she's holding her own. (knock on wood).

Our neph has not pushed a biopsy and neither have we at this point. The problem is as he tells me that they only take 20-30 filters out of something like millions (someone correct me if I'm wrong-I can't remember the numbers-but it's a very small sample) to look at under the microscope. So they could easily sample healthy kidney even if the kidney tissue around it was diseased.

Now, don't get me wrong. I totally support getting a biopsy if one is warranted. I just wanted to share our story about why we have decided to wait. My daughter is doing ok on the pred at the low dose, she is now growing (she doesn't grow much when she's on the higher doses) and she has slimmed down a lot. Her attitude seems much better now too. So as my neph put it, right now we don't want to "rock the boat" by trying to wean her off again and risking another relapse.

We're just living one day at a time.

Hang in there and trust your gut. You'll make the right choice.

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• By lamom
• Posted June 23, 2008 at 7:27 pm

I am very new to this form of communicating about my son's disease - but I will try and answer your message, using our experience. My son experienced high protein levels in his urine in the fall of 2006. It was told to me by the neph that we would not need to initially bio since 80 percent of children have n.s. Unfortunately, we treated my son with 70 mg of steriods A DAY for 6 weeks and we had only a small positive change in lab work. At that point, the neph and my husband (who is a physcian) decided that bio was necessary to know what we were dealing with. The bio showed FSGS - and we were devasted. But, the good news is that the exact treatment that you describe is what we did for our son and HE IS IN COMPLETE REMISSION. We did the leukran (spelling) with tapering of steriods. We monitored white blood cell count weekly with blood tests and would often have to stop giving the leukaran due to wbc being too low. (He even went into isolation for 9 days) As each week passed, the steriods were lowered. After 10 weeks (I think that is right) we stopped the leukaran , but continued tappering the steriods. His albumin rose and his protein in the urine would go down each week with the leukaran.

There really were no negative side effects to the leukaran that we experienced. Some stomach upset, but for the most part, very mild. We expected it to be much worse.

My son also takes vasotec and is currently only taking 3mg of steriods every other day. His labs have continued to improve and we feel very blessed. Our neph is at Tulane Hospital for Children in New Orleans and is VERY approachable. We totally believe in him and what protocol he picked for our son. If you would like me to contact him on your behalf, I would be happy to do so. It is my understanding this protocol is also used by one of the most respected ped neph's in the country. I think she is in MA somewhere. My husband knows - but honestly, I cannot remember.

I truly feel like we had a miracle.....I hope and pray that you have a similiar outcome.

Diane

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• By HH
• Posted June 23, 2008 at 9:22 pm

Thanks so much for the input everyone. My husband and I talked to the nephrologist's nurse practitioner this morning. We are going to go ahead and have a biospy done on July 15th (be praying for us). Our thought is that since Jordan keeps relapsing that if we use another drug either cytoxan or chlorambucil that we might get him off the prednisone for a longer period of time.

We thought about waiting, but we would really like to try this during the summer instead of depleting his immune system so much this winter. Also he is supposed to start preschool so in a way we just want this step behind us sooner rather than later. Hopefully it will just confirm that minimal change is the problem.

I will post after the biospy and let you all know how it went.

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• By micsmf
• Posted June 25, 2008 at 2:10 pm

Our son was 4 when he was diagnosed last Aug. He has relapsed 5 times since his diagnoses. We have been on pred. since he was diagnosed also w/ only about 5 days in total off the meds. I started our son on Aloe Life Concentrate aloe vera juice 1tsp. right when he wakes up and 1tsp. right before bed. He was on 4mls of pred at that time. 2 days after starting the aloe w/ the pred his protein count was 3+ on the urine dip. Since this was a friday our Neph. gave us until monday to see if we would have any changes, because if not he would also have to start a round of cytoxin w/ his pred! I did not want to do that. We just kept doing what we were doing and to our surprise his urine count was at neg. by monday!:) His body had never done that. We are at 2mls a day and the same aloe regimen still. His urine dips have been the cleanest they have ever been. Our Neph. does/doesnt want us to do a biopsy. He says they are very evasive. He doesnt have any reason to believe this is anything other than Neph Synd MCD because our son is still quickly responsive to prednisone. He is steroid dependent but his body is responsive. Our son was relapsing about every 5 weeks to the day, but he hasnt relapsed since the beginning of April:) I would try to venture out and see how he responds to homeopathic aloe first (of course not if he is allergic)! I hope you all do well!

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• By Mika
• Posted June 25, 2008 at 9:24 pm

My son became sick in April of 2007 at the age of 13 months. At first we were told that it's most likely minimal change disease but when his condition got worse very quickly and he did not respond to steroids at all then the doctors started to think that it might be something ales. We did not want to wait long to do the biopsy since he was very sick and they could not control his swelling, we could not even leave the hospital. I can't remember exactly but the biopsy was done in about a week of him being admitted to hospital. It showed FSGS. They kept him on steroids for a while longer just to see if they will start to work but with no improvement they decided to try cyclesporine. But the cyclesporine made him even more sick and he needed several blood trensfusions just to stay alive and developed a blood clot on the lung. After that they tried plasma phereses and that did help a bit but not enough for him to be able to leave the hospital. They said that they were running out of options and wanted to remove his kidneys but decided to try Rituximab first. He got four doses of rituximab and went into remission after seven weeks from the first dose. He stayed in full remission for six months but once his B cells started to return he relapsed (+1) after a couple of weeks. He was given one more dose of rituximab and went back into remission after two weeks. He was also started on Cellcept. This time his B cells came back after two months since he only got one dose of Rituximab but the Cellcept must be helping since he is still in full remission over two months after his B cells started to come back. We do not know how long his remission will last however this Rituximab and Cellcept combination is working well in his case. He also has no side affects to either medication, he is growing and developing normally and looks and acts like a normal two year old. I know that everyone is different and different medications work for different people but considering that he almost died and most of the doctors felt that the only thing that can be done is to remove his kidneys, then it is amazing how well he is doing now.

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• By duker
• Posted June 26, 2008 at 8:20 am

Mika,

I am so sorry for all you have been through! it sounds very similar to my daughter. Thank youfor the ray of hope with rituximab -- if you dont mind - would you email me the name of your hospital and neph? thanks
pamduke@comcast.net

Duker

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• By D-Marie
• Posted June 28, 2008 at 1:00 am

Just want to say good luck to you. We are new to this site. Our son had NS(minimal change) since age 2. He always responded to the prednisone and from age 6 to 9 never had a relapse but within the last few years has been relapsing again - so we are now deciding on Cytoxan but the doc did mention maybe a biopsy, it really is a hard decision!

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