What now after diagnosis?

The Foundation for IgA Nephropathy

What now after diagnosis?

Ok, let's preamble this by reminding ourselves about how IgAN can vary in different people, and about how there are no set treatment plans for it. Having said that though, there are a few things that should generally start happening once a person has been diagnosed with IgA nephropathy.

After initial diagnosis:

Don't panic! For the majority of patients, IgA nephropathy is relatively free of troublesome symptoms until and if it progresses to more advanced chronic renal insufficiency. If you have the most common slow type of IgAN, you don't have heavy proteinuria (most IgAN patients don't), and it has been found relatively early on in the process such as following a routine medical which happened to find blood in your urine, life will most likely go on as normal for many, many years. Not everyone who develops IgAN will progress to end-stage renal failure within the course of a normal lifetime.

Lab results. Your lab results plus your biopsy results if you have any will influence what kind of treatment plan your doctor adopts for you. See the appropriate section on this website for more specific information about each item. You can use the google search box on the main page to search the website.

Ask your doctor what the treatment plan is. See the Treatment of IgAN section for more information.

High blood pressure medication. A high blood pressure medication from the ACE inhibitor class is the most likely treatment (ACE stands for angiotensin converting enzyme), even if you don't actually have high blood pressure. Increasingly, since their appearance on the market in 1995, a second class of drugs called angiotensin II receptor blockers may be used instead of or combined with an ACE inhibitor drug. These drugs are close cousins of the ACE inhibitors, acting as they do on the same blood pressure control system in your body, but at a slightly different level.

Steroids. An oral steroid called "prednisone" may be prescribed if you have a certain level of proteinuria. In cases of very heavy proteinuria, steroids may be given intravenously.

Other immunosuppressants. If you are suspected of having a more aggressive form of IgAN, your doctor might suggest a relatively new drug called Cellcept. This is the same drug that most current kidney transplant recipients take as part of their anti-rejection protocol. Use of more aggressive immunosuppressants depends on several factors which are best discussed with your nephrologist. Usually not used in mild cases though.

Should you start taking fish oil? Maybe, maybe not. Read the fish oil page on this website.

Ask about some of your lab results. See Tests section of website for more information.

Serum Creatinine. Ask what your serum creatinine is. You might find it useful to start keeping a log of this, as this is the main number from which you will be able to track your kidney function over the following years.

Proteinuria. Ask what your proteinuria level is - in grams or milligrams per 24 hours if you have done a 24 hour urine collection, or as the protein/creatinine ratio if that's what your doctor has (no urine collection, just a spot urine sample).

Potassium. This will only be of interest if you already have more advanced chronic renal insufficiency by the time you are diagnosed, but it's not a bad idea to know what it is for future reference.

Hemoglobin. As with potassium, this will only be of interest if you already have more advanced chronic renal insufficiency (CRI) by the time you are diagnosed, or if you have heavy proteinuria, but similarly, it's not a bad idea to know what it is for future reference. As CRI advances, anemia may become a problem that needs to be addressed (as indicated by your hemoglobin level). Some drugs may have anemia as one of their adverse effects.

Ask your doctor about lifestyle changes:

Stop smoking

Avoid excessive alcohol consumption (moderate may be Ok, ie. one drink per day).

Ask if any diet is necessary (it might be, or it might not, depending on how much renal insufficiency you have, or whether it's necessary to limit sodium intake)

Ask if and what exercise would be appropriate.

Biopsy. If you have not had a kidney biopsy done at this point, ask why. It may or may not be necessary unless proteinuria is significant.

Read this website, and if you feel like you would like to communicate with others who have this disease (or the parents of children with IgAN), join our IgAN Support Group on Yahoo Groups. Some people may feel overwhelmed by information, and some may prefer not to join a group. That's your choice, and there are no invalid choices. It depends on the individual.

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