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Crohn's Disease Forum » Parents of Kids with IBD » Crohn's and IGA nephropathy


01-04-2014, 08:00 PM   #1
Johnnysmom
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Crohn's and IGA nephropathy

My son was diagnosed with crohn's disease in October 2011 at the age of 11. He had pneumonia in November and started to have blood and protein in his urine. After many tests and meeting with a nephrologist he has been diagnosed with IGA nephropathy. The nephrologist has decided not to perform a biopsy for confirmation of diagnosis because Johnny is already on immune suppressant medication which is the treatment that is recommended anyway so the Dr felt he didn't want to subject Johnny to the risks of a biopsy, for now at least. We will be meeting with the Dr. in 3 weeks to discuss if we want to go ahead with the biopsy.

The nephrologist sent us a recent journal article that shows there is a connection between crohn's and IGA nephropathy. I am wondering if anyone else has both of these conditions and how it has changed their treatment for crohn's?

I am also wondering if it is safe for Johnny to keep taking daily Miralax? He has been taking it daily for years and I am just now reading about the dangers of Miralax in kidney patients. I have emailed the nephrologist and waiting for a reply.

Thank you, I appreciate any advice/experience anyone has had with IGA and crohn's.
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01-04-2014, 08:13 PM   #2
Brian'sMom
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Is the crohns drugs what causes the correlation or just the crohns itself? Sorry I can't help I havent heard of this. I plan on googling it. Sending hugs and support!
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symptoms 2005, official dx 6/2010

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Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
01-04-2014, 08:18 PM   #3
my little penguin
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DS also has kidney issues ( multiple bilateral renal cysts - undetermined yet if its auto dominant polycystic kidney disease.)
But he takes miralax daily and has for over three years.
His nephrologist was not concerned.


Creatine usually has to be checked for DS just prior to use of barium though.

No igA neuropathy here .
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01-04-2014, 08:43 PM   #4
Johnnysmom
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Brian's mom,

IGA nephropathy is the most frequent kidney biopsy diagnosis in IBD and it is suggested there is a common pathogenic mechanism. There were no connections between medications for crohn's and IGA discussed. But, the article did discuss tubulointerstitial nephritis, a kidney condition which is related to aminosalicylate exposure (5ASA).

MLP, I will be interested what the nephrologist thinks. The Miralax was on his medication list when we went to our appointment and nothing was said about it but he was waiting to get some of the blood work and urine tests back and I forgot to ask when he called with the results.

I am not sure if Johnny even needs Miralax anymore. Do you ever think of trying to wean your DS? He hasn't tried to be off of it since he has been in remission.
01-04-2014, 08:47 PM   #5
Farmwife
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I'm sorry to hear about another dx for him.
No help here. I've never heard of it. I guess Mr Google will be busy tonight.

Hugs
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01-04-2014, 08:50 PM   #6
my little penguin
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We were able to get him off miralax when he was on remicade .
We had to add it back in when he started humira.
We have been slowly lowering his dose .
01-05-2014, 04:41 AM   #7
DustyKat
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So sorry to hear you have another thing to deal with Johnnysmom.

No IGA nephropathy here, both of mine did have a degree of Hydronephrosis but that is more of a secondary response to structures coming into contact with each other.

So, I assume IGA nephropathy results from a response to inflammation elsewhere. That being the case and the fact that there appears to be a connection to Crohn’s, is it deemed an EIM of IBD?

Dusty. xxx
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01-05-2014, 10:03 AM   #8
Tesscorm
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I'm so sorry that Johnny's been diagnosed with this. I only know what I learned through a quick 'google' but I hope that it can easily be controlled. Good luck at the apptmt, are they considering a change of meds or can he just be watched while continuing with his current treatment?
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01-05-2014, 10:13 AM   #9
my little penguin
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Yeah that^^^^ since it started while on his current meds ....
Does he need stronger immunosuppressants to eliminate it.
01-05-2014, 11:28 AM   #10
kimmidwife
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Sorry to hear about a new secondary diagnosis. Not fun as we have recently started on that journey ourselves. I hope they figure things out quickly.
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01-05-2014, 02:52 PM   #11
Johnnysmom
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Dusty, IGA is not an EMI of Crohn's and it actually has EMI's of it's own. From what I understand it is a separate auto-immune disorder. Or auto immune reaction, the IGA antibody release is somehow activated during a respiratory infection and for some reason makes deposits of IGA stuck in the glomeruli of the kidneys. The IGA release is not originated from the lymph tissue but from the bone marrow. The Dr remarked that Johnny's pneumonia attacked his bone marrow because his WBC went down to a 2 during his illness and normally would have gone up because of infection. The pediatrician said some viruses attack the bone marrow and that although uncommon, it is not unheard of.

The Dr. said that about 30% of pediatric diagnosis of IGA will result in a quick decline of kidney function and dialysis within a year. Another 30% will have a slow decline, respond to steroids, immune suppressants and blood pressure meds and will lose kidney function slowly over 10-20 years. The other 30% will never progress into kidney failure, although it is possible to leak protein and blood in the urine for decades after diagnosis. He said the level will ebb and flow, which is somewhat consistent with what we are seeing with Johnny as his levels have gone up and down since his urine was first tested. But that kidney damage will never occur in that group.

They don't really know what category someone will fall into when diagnosed. Some good prognostic indicators are having a normal blood pressure, proteinuria <1gram per day, and normal GFR (Glomular filtration rate). Johnny has normal blood pressure, his proteinuria was 47.3 mg/dL, and had a normal GFR. His protein was only a one time drop, so I am assuming it is low enough that they don't need to do a 24 hour urine drop. The only indicator that the nephrologist was uncomfortable with was that he had casts in his urine. I don't think at this point they would even treat him, but he is already on immune suppressants for his crohn's. It is such a slow progressing disease they usually follow protein and blood in the urine and blood pressure hoping that disease progression will not take place. I think they are pretty certain that Johnny will not fall into the 30% that quickly deteriorates so they will regularly check him knowing that any changes that take place will happen slowly enough that more aggressive treatments will be started if the disease begins to progress.

If his blood pressure goes up, the protein or blood increases or his GFR drops they will use prednisone and stronger immune suppressants. Hopefully, we won't have to go there. Johnny's IGA serum protein profile was normal and I know it is high in auto immune kidney diseases so I think that is a good sign too. I know we would get more information about the prognosis if we had a biopsy but there are risks involved and he is already on the treatment they prescribed so both the GI and nephrologist felt it was best not to do the biopsy at this point. I completely agree, although I do have a few more questions about it.

I only had a phone conversation with the nephrologist after all Johnny's labs came back so I didn't get a chance to get a lot of information. We will be seeing the nephrologist again in 4 weeks and I will have a better chance to ask more questions. The nephrologist said he will treat 10's of thousands of kids with IGA and the GI will treat 10's of thousands of kids with crohn's but together they will treat only a handful of kids with both in their careers. I know they have already been in discussion about how to treat these diseases, but I have a feeling that there is not a regular treatment protocol. I do however have complete confidence in both Dr.'s they have both gone above and beyond.

The journal article the nephrologist sent me is from Feb. 2014, "The Histopathlologic Spectrum of Kidney Biopsies in Patients with Inflammatory Bowel Disease". It's so new I am not sure it would be available online yet.
01-05-2014, 03:17 PM   #12
my little penguin
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Many hugs
Kidneys disease seems to be a lot of waiting and seeing.
DS is similar in the it could be kidney failure or do nothing at all
To his kidneys . We won't know for sure until he reaches age 30 or we have genetic testing.

No treatment to stop it so better to not know at this point.

Wishing you the best in deciding on the biopsy .

Surprised that you didn't have to do 24 hour urine
That is pretty standard for him.
01-05-2014, 03:37 PM   #13
my little penguin
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There were 45 cases of CD and 38 cases of UC represented. The most common indication for kidney biopsy was acute or chronic kidney failure (63% [52 of 83]) and nephrotic-range proteinuria (16% [13 of 83]). IgA nephropathy was the most common diagnosis (24% [20 of 83]), followed by interstitial nephritis (19% [16 of 83]), arterionephrosclerosis (12% [10 of 83]), acute tubular injury (8% [7 of 83]), proliferative GN (7% [6 of 83]), and minimal-change disease (5% [4 of 83]). When compared, the frequency of IgA nephropathy in IBD was significantly higher than in all other native renal biopsy specimens from the same time period (24% [20 of 83] versus 8% [2734 of 33,630]; P<0.001). Of the 16 cases of interstitial nephritis, 9 (56%) had current or recent past exposure to aminosalicylates, including all cases of granulomatous interstitial nephritis.
CONCLUSIONS:
IBD is associated with a spectrum of kidney diseases most commonly affecting the glomerular and tubulointerstitial compartments. IgA nephropathy is the most frequent kidney biopsy diagnosis in IBD and has a significantly higher diagnostic prevalence compared with all non-IBD kidney biopsy specimens. This may reflect a common pathogenic mechanism. Although many cases of tubulointerstitial nephritis are related to aminosalicylate exposure, the possibility of a direct relationship with IBD cannot be ruled out.


Clin J Am Soc Nephrol. 2013 Nov 21. [Epub ahead of print]
The Histopathologic Spectrum of Kidney Biopsies in Patients with Inflammatory Bowel Disease.
Ambruzs JM, Walker PD, Larsen CP.


from:

http://www.ncbi.nlm.nih.gov/pubmed/24262508
01-06-2014, 05:04 AM   #14
DustyKat
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Thanks for that Johnnysmom.

I hope monitoring continues to show that Johnny’s renal function is stable and it stays that way for a very long time to come. Good luck with the appointment!

Dusty.
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