Prednisone for nephrotic syndrome?

[Sahil]

My 3 years old daughter is a celiac which was diagnosed when she was 2 and has been recently diagnosed with nephrotic syndrome. She is on Open Original Shared Link for past one month and there has been no improvement on her protein levels until now. Doctor recommended to go for kidney biopsy.

What should I do?

[cyclinglady]

2 hours ago, Sahil said:

My 3 years old daughter is a celiac which was diagnosed when she was 2 and has been recently diagnosed with nephrotic syndrome. She is on Open Original Shared Link for past one month and there has been no improvement on her protein levels until now. Doctor recommended to go for kidney biopsy.

What should I do?

I am sorry your daughter is ill.  I assume she has been gluten free since her celiac disease diagnosis?  Is it possible to get a second opinion from another doctor regarding the kidney biopsy?  

 

 

[Sahil]

9 hours ago, cyclinglady said:

I am sorry your daughter is ill.  I assume she has been gluten free since her celiac disease diagnosis?  Is it possible to get a second opinion from another doctor regarding the kidney biopsy?  

I'm not sure at the moment whether I should seek a nephrologist or a gastroenterologist

[kareng]

1 hour ago, Sahil said:

12 hours ago, cyclinglady said:

I am sorry your daughter is ill.  I assume she has been gluten free since her celiac disease diagnosis?  Is it possible to get a second opinion from another doctor regarding the kidney biopsy?  

I'm not sure at the moment whether I should seek a nephrologist or a gastroenterologist

Who diagnosed this?  I would insist on a pediatric kidney specialist!  What doctor is going to do this "kidney biopsy"?  I think you  need to ask more questions.  If you can't do it with the child in the room, bring someone with you to take the child out.  Write down questions.  Maybe bring someone else who is more assertive than you seem to be to help you get actual answers.

[Wheatwacked]

Sahil, there is not much more frustrating then to watch our children suffer. It isn't their fault.

"In many kinds of kidney disease, inflammation occurs when immune complexes deposit in kidney. Immune complex is a combination of antigen and antibody and formed when immune system is weak or immunity is poor."

Prednisone treatment for nephrotic syndrome has been researched and proven effective, often the best. If she is not declining, wait on the actual biopsy but a workup by a nephrologist with celiac disease experience would be best and it seems that is your doctors approach. Get her vitamin and minerals levels checked because with celiac disease there are almost certainly nutritional deficiencies that will effect recovery. Do not assume. Especially iodine and vitamin D and, as I just learned Iron.

Biopsy can give important information as to the actual disease process, and may be necessary to  fine tune treatment, but it may not be needed if the treatment works. Biopsy is a rather traumatic procedure for your child.

Open Original Shared LinkPrednisolone is a steroid medicine that will get rid of the protein in the urine and the extra water but it needs to be taken over a long period of time (months)...The use of steroids in children receives a lot of bad press. However, use of prednisolone in nephrotic syndrome provides a lot of benefit, and is unlikely to cause any long-term harm as long as you use the medicine as your doctor has told you to. If you are at all worried, talk to your doctor or pharmacist.

*Oral Prednisone is converted by the liver into prednisolone, so I think a safer choice, and what I believe you say she is on.

nice reads: Open Original Shared Link "Treating Kidney Disease with Steroids" patient information.

                   Open Original Shared Link  Open Original Shared Link

 

 

 

 

 

[Wheatwacked]

People get all freaked out when you say you are using Prednisone because it is a steroid and we all know that steroids are bad and are used to cheat in sports, and everyone knows. Wrong.

A prednisone story for perspective.

My last black lab was on prednisone from nine months old until he died at nine and a half years old of degenerative myelopathy complications. He had congenital hip dysplasia.  We found it on x-ray when he was nine months old. He lived a normal life, mostly an indoor guy. When he was x-rayed at nine, to find why his rear toes were dragging the vet found that his hips had no arthritic deterioration compared to his puppy films. It seems the prednisone had protected him. Almost every other dog I have had prior to Riley, most living to 13, ended up on prednisone because of arthritic damage.

Do not discount your doctors treatment plan because of social pressure or scary stories. It might be the best choice.

[Posterboy]

On 1/28/2018 at 10:00 PM, Sahil said:

My 3 years old daughter is a celiac which was diagnosed when she was 2 and has been recently diagnosed with nephrotic syndrome. She is on Open Original Shared Link for past one month and there has been no improvement on her protein levels until now. Doctor recommended to go for kidney biopsy.

What should I do?

Sahil,

Let first say this is not medical advice.

But I have done a lot of nutrition research and often research other topics as they come up.

But you should look into taking a good B-Complex preferably 3/day (each meal) or 2/day if that is not convenient. Most B-Vitamins/complexes can be taken on a cycle of 6 to 12 months with only positive benefits unless there is MTHFR gene defect for Folic Acid etc.

Both B-1 and B-3 have been shown to help kidney issues.

Open Original Shared Link

entilted from 2008 "Thiamine 'reverses kidney damage'" in those who have type 2 diabetes research shows.

I can confirm this research I have TD2 and had creatine in my kidneys at the time I began supplementing with Thiamine (B1) and have not had Creatine or Albumin issues since taking a cycle of B-1.

A B-1 deficiency is an oft forgotten disease today known as Beri Beri.

Also here is the B-3 research.  Again a B-3 deficiency is an oft forgotten disease today known as Pellagra.

from the kidneyabc website.

Open Original Shared Link

quoting

1. Vitamin b3 can slow down the progression of PKD

"The medical research has proven that vitamin b3 has the effects in inhibiting the activity of SIRT1, which affects the formation and growth of cysts. Besides, vitamin b3 may decrease the rate of infants who are at risk of experiencing PKD."

it did not say reverse but slow the progression.  The B-3 is working when she begins burping if she does not now. This will take 3 months time to notice any descernable signs Niacin/Niacinamide is working.

So this is not some magical cure . .  but any help it can provide I think I would be interested in exploring.

Ask your pharmacy if the Niacinamide form or the flushing Niacin form is best.  Being 3 she might not understand how the Niacin flush is helping her by opening her capillaries letting more blood flow into her kidneys.

I usually recommend to my friend the non-flushing Niacinamide form but Niacin (flushes over2 days usually for 30 minutes after a meal) might be better in this case due to the vasodialtion effect of Niacin. 

I honestly dont' know which form is best or if it matters.  Again ask your Pharmacist/Doctor.

This may be true for B-1 as well.  It could take 3 to 6 months before her kidney function improves if this helps.  So be patient with this approach.  there are various forms of B-1 too.  Benfortiamine is the fat soluble form where thiamine is the water soluble form.  Again ask your Pharmacist/Doctor which is best.

And B-Vitamins are known/have been shown to help Celiac's on a gluten free diet.

https://www.celiac.com/articles/21783/1/B-Vitamins-Beneficial-for-Celiacs-on-Gluten-Free-Diet/Page1.html

Sahil I hope this is helpful.

AGain this not a magical cure but research shows B-Vitamins helps celiac's and that B-1 and B-3 specifically have shown to slow and even help/reverse kidney issues in those who take it aggressively for a cycle (especially in TD2) patients and there is no reason it might not help those who are having Kidney issues for other reasons.

I do know taking thiamine helped my creatine and Albumin levels.

I was taking it for my creatine levels due to my TD2 but my Albumin levels got better too!

Though my blood sugar is not super elevated these days . . . it is not under control either. . . but my Creatine and Albumin levels are normal.

Only a Vitamin explains the difference.

Again I hope this is helpful.

********* and again this is not medical advice just things I have learned from studying nutrition and form taking B-Vitamins that helped me with some of my TD2 complications.

Don’t every stop being your own advocate!

2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 

4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble (fellow sufferer), by the comfort wherewith we ourselves are comforted of God.”

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,