Iga nephropathy info please

Sad to hear your story. Sometimes this is genetical, I had a similar scenario and did a biopsy. I am on 34 GFR and had a long time BP issues. 20 is not bad if you maintain it with good food habit, you can go for 20 years, but it all depends on the person. I am in your age and have same concerns, and transplant is the last resort. But you always should check on your other body organs and there functions. Complications are very bad when it comes to the point you need a transplant if ever you need it. Do regular workouts (not heavy), keep the weight control. Diet is very much needed, based on your blood work reports and nutrition requirements. because now the kidney is not doing its job 100%. I cant answer your question about medicine, I am not a doctor.  

Hi

I copied this from the National Kidney page, I hope this gives a bit more help.

Have you been referred to a specialist??

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What is IgA Nephropathy (IgAN)?

IgA Nephropathy, formally called Berger’s Disease, is named after the French pathologist Jean Berger (1930 – 2011) who first recognised the condition.

IgAN is a disease, which involves the immune system and the kidneys. This disease results in end-stage renal failure requiring dialysis or a kidney transplant for 25% of those affected.

One of the functions of the kidneys is to dispose of the bodies waste products by sieving the blood and producing urine. Sieves called glomeruli separate out the useful parts of the blood from the waste. There are about 1 million glomeruli per kidney.

IgA is a type of antibody, it is part of our immune system, our natural defence against infection. We have a lot of IgA in our blood, lungs and guts.

The pathway which leads to IgAN starts with the production of unusual IgA in the blood. The next step is an auto-immune response to this IgA which results in circulating IgA1 containing immune complexes. Once in the kidneys, these complexes are trapped in the glomeruli and bind to receptors on the surface of mesangial cells causing the cells to grow and make proteins; thus reducing the kidneys’ ability to carry out their filtering function. This process affects both kidneys.

Symptoms

IgAN may be undetected for several years as it commonly does not cause any obvious symptoms.

When symptoms do occur they may include:

Blood in your urine (haematuria), which can either be visible to the naked eye or only detectable with a  urine test. Visible haematuria often occurs when you have a sore throat, a stomach upset or after exercise.Protein in your urine (proteinuria), detectable through a urine testHigh blood pressure (hypertension)Reduced kidney function, detectable through a blood test which will show a raised creatinine level.

Kidney function is measured using the  eGFR (estimated Glomerular Filtration Rate) which is a calculated value based largely on the creatinine level in your blood. It can be useful to think of eGFR as a percentage of kidney function, an eGFR of 100 equating to 100% fully functional kidneys.

None of these symptoms prove you have IgAN. The only way IgAN can be diagnosed is through a kidney biopsy.

Causes

Extensive research is being carried out into the cause(s) of IgAN. 

Known factors:

The IgA molecules of IgAN patients have small but important differences in structureThere are small but important differences in the way the immune system controls the manufacture of IgA

Unknown factors:

Why the IgA sticks in the glomeruli

Why it causes much more damage to the kidneys in some people than others

Why it is more common in males

Why it is more common in some parts of the world (eg China, Japan) than others

Treatment

There is currently no specific treatment to cure IgA nephropathy. 

Current treatments focus on:

Reducing blood pressure through exercise, weight control, salt level intake

Reducing protein in the urine by managing blood pressure

Choosing blood pressure medications which can specifically reduce proteinuria

Clinical trials are currently underway around the world to test a number of potentially new therapies for  IgAN. Over the next few years these trials should give us valuable information on how best to treat IgAN.

How does IgAN affect someone?

Once IgAN is diagnosed it can be difficult to predict how or if the disease will develop. IgAN is a variable condition, a number of things may happen:

It can go away completely

It can stay the same for yearsThe kidneys may slowly lose function

The kidneys may fail completely

IgAN may recur after a kidney transplant

Nearly always, things happen slowly in IgAN. A kidney biopsy gives more information which may help with the prognosis and to predict what will happen to a person with IgAN. 

In 2009 the Oxford Classification of IgA Nephropathy was developed to help kidney doctors decide which patients with IgAN were at risk of kidney failure and which patients might be suitable for clinical trials of new therapies. 

Clinicians are getting better at predicting the progression of IgAN and considerable research is being carried out into this area.

    

I’m so sorry that you are going through this. My husband is 49 and we have knows for 20

Years he has had kidney disease but never expected it to really progress. Last September he went to the doctor because he was about to deploy and they told him his kidney function was at 23%  and he would be on dialysis by Christmas. We felt like our world had turned upside down.  9 months later and he is still at 23%. Hang in there and do your reading and eat well and exercise and it could be years before you need to face transplant or dialysis.  I hope the best for you .

I also have iga. Have known for about 9 months. Was diagnosed at around 25 gfr and have largely maintained that in the time since. Largely due to blood pressure meds i think, but I'm also on statin and fish oil.

My nephrologist is fairly certain ill reach end stage eventually. Have already started working up for a transplant. But i hope i can ward it off for some time, but the nephrologist just can't say and it is a month to month proposition. If you have someone who might volunteer their kidney it might be time to ask as it means you can avoid dialysis.

My nephrologist felt i was 'too far along' for steroids and the side effects did not warrant their use, but i know this is debated and not set in stone.

I'd recommend moderating your diet. In particular removing salt and saturated fats where possible. You need to start thinking about your cardiovascular risk.

Best wishes i understand how hard this is.

Hiya

I know it's scary. I am also an IGA sufferer. I was diagnosed in 2014 after a biopsy with a gfr 30, caused by my auto immune system. I am also on lasarton and VD tablets. I have bloods done every 3 months and see consultant every 6 months. Reduce your salt, protein and watch your fat intake. Also don't take any ibrofen only paracetamol if in pain. My gfr has jumped over the 3 years. Currently I am at 34 gfr which is the best I have been in ages.

Good luck X

I too have IGA nephropathy; I echo what others say - reduce the salt, reduce (but don't eliminate) the protein, get exercise to reduce blood pressure.  I have two things to add - one, avoid foods high in potassium - eg. potatoes, tomatoes, bananas, oranges.  Because your kidneys can't excrete materials as efficiently as healthy kidneys, a sudden increase in potassium can lead to a heart attack (no kidding).  Two - reduce your intake of phosphates - check labels on food products and anything with ingredients starting "phos" means you shouldn't buy it. This also includes reducing / moderating milk products (milk, cheese, chocolate...)  Why?  Again, your kidneys can't get rid of things quick enough and a build-up of phosphates will leech calcium from your bones.  That's one of the reasons why your doctor has you on calcium.

As for whether you'll likely need dialysis/transplant:  the only way to know is to get your kidney function tested regularly and plot the results on a chart.  Over time a trend will reveal itself.

I hope that helps.  Good luck!