Second Opinions

My son has been on steroids for almost one year. To make a long story short, if that is possible....he has not been off them for one day during the past 11 1/2 months. He has MCD and early onset of FSGS. We are told he is steroid resistant which frustrates me for many reasons. Our doctor is suggesting Prograf, Cyclosporine, or Cellcept. Trying to get into to see a doctor a Strong Memorial and Levine Hospital for a second opinion. Any insight or help you can suggest would be wonderful. On a side note, by son is 'multiple handicapped' which adds to his situation, so it is not as easy as putting him on another drug. The side effects concern us greatly. Thanks.

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I meant 'my son', not 'by son.'

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FSGS doesnt respond to steroids well. I only have experience with Prograf which is Tacrolimus. Our 9 year old takes it daily to keep the T cells in check. She has done much better since off all the steroids and using it. She has no side effects from it, except tired. BUT the kidney disease makes her tired so it would be hard to say it was from that. All her blood numbers are getting better, though she is not in remission. She also takes supplements and a restricted diet. I think it is all of the these things helping her. She was on/off Pred for 18 months, so I know your fears. It can be very damaging by it self. Look at other responses to these drugs under the search here. Many people have had your situation. Many children go into remission with Tacrolimus. Good health to your child.

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Thank you for your feedback. I really appreciate it.

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My 17 year old daughter has story very similar to yours. She has been on prednisone for 10 months. During that time she went from high doses orally, to iv 1 gram for 2 weeks, back to oral with no response. The doctors have said she is steroid resistent too. She then went to taking Cellcept (2000 mg/day) for 4 months, while taking prednisone every other day. We had some encouraging response at first, but then she plateaued. She had very few side effects on Cellcept and it lowered her protein/creatinine ratio 1.4, but she relapsed after a hospitalization, and we haven't been able to get it back down since. She is still spilling +++ protein, and blood. They biopsied her in the beginning and said she had MCD, but it's looking more like FSGS. We have a second opinion on Monday to determine what medication is next ... Tacrolimus, or cyclosporine A, or Losartin? Our current doctor told us to decide what med to start next. I was very frustrated and feel it is time to consult another physician. I wish you the very best, let me know if I can answer any specific questions.

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Batman7, you mention that your son is 'multiple handicapped', I took a peak at your past posts and you mentioned allergies, and Miralax. I had to look up Miralax, and saw http://www.danasview.net/miralax.htm where he mentions if you have leaky gut that it could cause problems. I went to a local gluten free seminar and they were talking about how gluten intolerance/celiac could cause leaky gut, so thought I'd ask if you had tried going gluten free. It really helped our daughter, so though I'd mention it here. I know it doesn't help everyone, but when I see multiple symptoms, feel it is worth mentioning, yet again.

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I Am sorry that you feel alone with such a rare disease. I would suggest that you contact a patient advocate at NephCure Foundation. Uju can be reached at 610-540-0186 extension 15. You can also reach her by email at info@nephcure.org. NephCure is a foundation that serves people with FSGS, Minimal Change Disease and Nephrotic Syndrome.

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We had our second opinion on Monday at Strong in Rochester. It was very informative. However, they are still recommending the organ transplant drugs. I usually have a pretty good 'gut' feeling on issues that can lead me to a decision. But I have to be honest...I don't want my son on any of them. I realize they work for some, however, I feel they are going to do more harm than good for him. I am frustrated with the traditional approaches. Anyone have any success with nontraditional approaches? There has to be another way. His system has so many issues/challenges...I fear this will put him over the edge.

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>Anyone have any success with nontraditional approaches?
I mentioned gluten free, which could cover other autoimmune symptoms.

>His system has so many issues/challenges
Anything else possibly autoimmune related?

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Hi again,
We are doing gluten free and dairy free. I am wondering holistic approaches with vitamins and herbs that may help and/or work? His entire system has autoimmune dysfunction due to vaccine injury. His system is so delicate and needs to be in such balance to function.

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