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Diagnosed with IgA Nephropathy. Had pain on urination, oedema in both legs. History of RA. Suggest?

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Internal Medicine Specialist
Practicing since : 2005
Answered : 507 Questions
My name is XXXXX I have a bit of a complicated case history. I will try to explain it as simply as possible and then send all necessary reports so that you can examine them. I joined the Canadian Military in XXXXXXX 1992. I left the service in May 2009. One of the reasons for my leaving was due to my diagnosis of IgA Nephropathy. Since I was diagnosed I have received the best care that anyone could ask for from the best physicians and specialists. What I would like to find out is, after I present my medical documents to you, could my case have been identified sooner. Right now each of my kidneys is functioning at 67%. Here is my case history:

I reported to the Academy medical clinic with pain on urination. Blood test was administered. No proteinuria or hematuria reported in the urinalysis dated 7 Mar 1995. When repeated on 8 Mar 1995 small hematuria and no proteinuria reported. No follow test performed. A blood and urine test that I had on 12 XXXXXXX 1996 showed trace amounts of blood and protein in my urine. No follow up tests were performed. I had a blood and urine test complete on 5 Dec 1997, total protein was reported as high. Tests conducted on 6 Dec 1997 showed large blood but negative for protein. Follow up blood work on 7 Dec 1997 showed hematocrit low, lymph% high; mxd high%; neut% high; lymphocytes high; INR high. Urine test on 8 Dec 1997 showed no proteinuria or hematuria. Follow up urine test on 9 Dec 1997 again was negative for blood and protein. Final follow up blood work on 10 Dec 1997 had lymph% high; mxd% high; neut% low; and PT/INR high. On 16 Feb 1998 I had blood work done again which shoed low NA; CL and CO2. At this time I was also reporting to my Doctor that I had been having some real issues with leg swelling. So he gave me some stockings that I could wear at night to try and reduce the swelling (edema). He also recommended that I elevate them when I could to try and decrease the swelling. I had more blood work done on 26 April 2000 which showed everything normal. I continued to suffer from edema in both legs. On January 22, 2001 I had blood work done which included creatinine, BUN; Albumin, all normal, nor urinalysis done or any other testing. I also had an appointment with an internist who completed a basic examination and determined the following: "no history of rheumatic fever or cardiac disease, she is not SAD, as for her DVT, she is no longer on birth control pills. She has not had a sedentary life style and does not have a history of liver or kidney disease. Physically she is a tall, 5 foot ten inch obese woman, blood pressure of 105/65, with normal first and second heart sounds. Her chest was clear, abdomen was soft. Ankle had a mild edema of about one plus. Pedal pulses were palpable. I think she has so called idiopathic cyclical edema XXXXXXX After this consult I received a second pair of elastic stockings.

My edema in my lower legs did not get better with a second pair of stockings, it only worsened. I continued to let my Doctors know, but nothing was done. I had a series of blood work and urine analyses completed in 2002: 17 Jul 2002 urinalysis showed trace blood. Blood work on 23 Jul 2002 showed low Hematocrit, urinalysis was negative for protein and blood. Urinalysis for 24 and 25 of Jul 2002 were also negative for blood and protein.
August of 2002 I applied to a life insurance company for life insurance and RRSPs. I had to complete blood work and urine sample as part of the application. Blood work was good but urine came back with blood in sample. I was denied for application and told that once I checked it out (I was told that it was probably an infection) that I would be able to re-apply. I waited a year (late summer 2003) and made application again only to find blood in the urine once more. (I did not tell them that I had not gone to see my Doctor about this possible urine infection the last time.)
I did not go to my Doctor this time because I was working shift work and I could not really find the time.

At this point when I went in to get a full work up done, the follow ups continued regularly and I was able to finally get a diagnosis. My edema was taken seriously and I was able to get answers.

I was transferred from the Halifax, NS area in October 2004 to XXXXXXX ON. At that time I went to establish a regular Doctor at the base I was going to be working at and requested a full blood work up and urinalysis. The results of the tests done 28 October 2004 showed trace protein and trace blood. The test was repeated 13 January 2005 and again there was trace protein and trace blood. I was then referred to an internist in Toronto and I was sent to a Nephrologist in XXXXXXX by April 2006 and a biopsy completed, diagnosis confirmed as IgA Nephropathy.

From the point that I arrived in the XXXXXXX area, I was able to get things moving in the right direction. What I would like to know is the following.... could my IgA Nephropathy have been diagnosed in 1997 or 1998 or even in 2001 when I went to seen the Internist if the correct testing had been conducted. Id I had been diagnosed as early as 1997/98 or 2001, would my kidney function have been saved? At the time that I was finally diagnosed my protein output was as high as 3 grams a day and the samples from the biopsy showed that I had casts which then had me on high doses of steroids for then next 3-4 years. I am searchning for answers so I can come to terms with what I am living with right now. Any wisdom or knowledge you can offer would be appreciated. Thank you. XXXXXXX XXXXXXX
Posted Thu, 4 Jul 2013 in Medicines and Side Effects
Answered by Dr. Omer 1 hour later

I am Dr.Omer and I am here to help you with your query

I am really sorry for what has happened to you till now

As you have said it all started with pain in urine and finally you were diagnosed with IgA nephropathy

First of all I want to explain to you is that diagnosing IgA nephropathy is always a clinical deliema or i would say diagnosing any glomerulonephritic disease is always so difficult UNTILL AND UNLESS YOU DO KIDNEY BIOPSY

As the IgA nephropathy patients usually present with vague complaints like burning sensation while urinating like urinary tract infection

Or when people undergo incidental annual checking of urine and found blood or protein

On 12 XXXXXXX 1996 your next test should be urine for dysmorphic cells after seeing +1/trace? protein and blood in your urine, these are normal medical protocols, your dysmorphic cell would have been positive and that internist should have referred you to nephrologist and he would have done the biopsy and 24 hr urine protein and then would have started treatment or just observed you. But thats the ideal thing I just told you

But I also want to add that IgA nephropathic patients have so many presentation on urine analysis like no protein , heavy protein(1-1.5 gm), trace blood, visible blood etc)

Your next question is- would your kidney be saved? The treatment actually is based totally on urine analysis and creatinine. In 1997-2001 , I as a nephrologist would not have started your treatment , as with trace/+1, +2 blood and protein less than 500mg/day, observation is recommended

Your treatment only be started when
1.creatinine increasing
2.>1gram protein
3.>+3 red blood cells
4.Biopsy report

What your nephrologist did was perfect with all the criteria met and started prednisolone (steroids) for 3-4 years, its the delay in referral to nephrologist + delay in biopsy+.

Secondly you developed deep venous thrombosis either due to high protein in urice causing nephrotic range IgA nephropathy or you have sister disease of IgA that is Anti phospholipid syndrome with high INR.

You developed edema due to leakage of protein in urine hence your water was accumulating outside your vessels

In the end I would say that diseases just happen and we as Doctor think the best about our every patient at every step.

As your kidneys are 67% working , I assure you that your kidneys wont deteriorate any further.

I hope this explains your query

Take care
Above answer was peer-reviewed by
Follow-up: Diagnosed with IgA Nephropathy. Had pain on urination, oedema in both legs. History of RA. Suggest? 2 hours later
A blood and urine test that I had on 12 XXXXXXX 1996 showed trace amounts of blood and protein in my urine. No follow up tests were performed. I had a blood and urine test complete on 5 Dec 1997, total protein was reported as high.

So if the correct testing and referrals had been conducted in 1996 or 1997 after either one of those tests had showed blood and protien in the urine then a biopsy should have been done. Now at the time, if my kidneys were still 100% functioning, then as my the creatinine levels, blood and protein in the urine increased, treatment would have put into place and my kidney functioning levels should have remained stable. Would that be correct?
Answered by Dr. Omer 1 hour later

Thankyou for understanding what i told you.

YES to be more exact 5 Dec 1997 , when they tested your total urine protein , and that came out to be high , allows and directs us to go for kidney biopsy to find out the nature of disease rather than doing a general body tests

The follow up after that day was not specific disease oriented , though it should be according to Canadian nephrology association guidelines.

NO , I want you to know, no doctor in this world even with all tests can predict how disease is going to progress in a specific patient

Same diseases have different progression , prognosis , even therapeutic outcome in different patients with same disease

Besides you cannot feel any symptom of mild kidney failure (mild rise in creatinine.....171) even if you had early biopsy in 1996-2001. I hope you understand this point. Because you will only land in ER when your kidney damage grade is >1-2 .

I want to explain this point more to you , for example we did a biopsy in 1997 or any date, but you had mild heamaturia , mild proteinuria, observe the patient , and you have a monthly followup .

On 16 feb 1998 , you have low sodium meaning nephrotic syndrome (IgA) , with swelling problem , and history of blood and protein , you could be biopsied by referral at that time too

Military people keep a record of their soldiers , and every army doctor can go through that so to check the past history

17 Jul 2002 urinalysis showed trace blood + edema + past history of on/off heamaturia, protein, they should have thought more and should have referred you.

In the end i would say, doctors can prevent a disease but can't predict its behavior. YES some negligency were taken in your case, but 67 % is much better than 1/3 patient going into complete kidney failure, blaming any doctor for your disease would not bring back the function of your kidneys.

Stay happy and healthy as life is always unpredictable and most of my patients with 12-15% functioning kidney live a happy and a long span life.

Hope this helps

Your feedback is very critical for me and XXXXXXX

take care
Above answer was peer-reviewed by
Follow-up: Diagnosed with IgA Nephropathy. Had pain on urination, oedema in both legs. History of RA. Suggest? 23 hours later
Dr. Omer,

I really appreciated your knowledge and your advice on the last query that I asked. I do have another situation that I am currently faced with that I would like to ask you about. I have been having a lot of pain in the left flank and left side area since August of 2012. I have had close follow ups with my nephrologist who is sure that this pain has nothing to do with my kidneys. My family doctor has had this pain checked out with a urologist, an internist (upper GI and colonoscopy) as well as several CT scans and an untrasound. We have found that my creatinine clearance has increased to 157, and my spleen is mildly enlarged. Other than that there seems to be no reason for this pain that is constant and chronic. I have been on pain medication, but that is not really managing it right now either. Ideas?? Thanks, XXXXXXX XXXXXXX
Answered by Dr. Omer 7 hours later

Sorry for late reply , just shifted to new apartment

As you have said that a constant , chronic pain in left flank area , and you had a thorough check up by nephrologist , gastroenterologist , urologist .

Let me explain you in the simplest way

IgA nephropathy is one symptom of multiple diseases , and all these diseases are due to dysfunctional immune system , known as autoimmune disease like henoch schleion syndrome (colonoscopy+endoscopy) , wegeners disease , celiac disease and so on. Your doctors have ruled out all these diseases

So the thing that is left is neuropathic pain or disease related low mood pain. Note that neuropathic pain can have autoimmune relations.

Creatinine of 157 will be taken as normal , though very mildly raised. Just keep a check on it say every 2-3 months.

Enlarged spleen (mildly) again is a symptom of these group of autoimmune diseases

Therefore in my opinion, if the pain is troubling, then medications such as pregabalin , venlafaxine , duloxetene , topiramate would be effective after few weeks. Managing your stressors adequately will also help. Discuss with your doctor about this options.

Lastly the treatment of all the symptoms of autoimmune diseases is steroids (prednisolone ) , a trial for few weeks will prove it or disapprove the disease along with above treatment

I hope this helps , though it was a tough question after all you have consulted and investigated

Take care of your self and stay happy

Above answer was peer-reviewed by
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