Treatment of IgAN

The Foundation for IgA Nephropathy

Treatment of IgAN

Standard treatment

Other than treatments which are currently investigational, there is no standard specific treatment for chronic IgAN. Treatment is given in support of specific symptoms, such as hypertension and edema. Some high blood pressure medications appear to have renal-protective effects that go beyond their ability to lower blood pressure, and one these may be prescribed even if the blood pressure is not yet elevated. Acute episodes with nephrotic-range proteinuria (> 3 g/day) often respond to oral corticosteroids (such as prednisone). In this case, the heavy proteinuria which is typical of nephrotic syndrome often abates, and the disease usually remains as a less aggressive chronic condition. Treatment of common slowly-progressive IgAN is usually conservative (blood pressure medications), while rapidly-progressive IgAN may be treated more aggressively (steroids, immunosuppressants). As chronic IgAN progresses, the patient will eventually start showing symptoms of chronic renal failure. As this begins to happen (sometimes over many years), nephrologists begin providing more frequent follow-up and appropriate pre-esrd care. Additional information on some aspects of treatment is given in the following paragraphs.

High blood pressure medications. One area where there is near complete agreement is on the subject of blood pressure. Impaired kidneys are very good at secreting a hormone which deliberately raises blood pressure. It is imperative that any treatment for controlling high blood pressure be followed rigorously, as high blood pressure itself further adds to the damage being caused in the kidneys, and it is an independent risk factor for ESRD (not to mention other cardiovascular complications). In addition to lowering blood pressure, some specific high BP medications appear to have renal-protective and/or antiproteinuric effects. Generally, this applies to all the medications of a given class, namely, the ACE inhibitors, and also their close cousins, the Angiotensin II Receptor Blockers. In some cases, some doctors are experimenting with using both at the same time. You can expect maximum reduction of proteinuria (up to about 40-50%) about four weeks after starting an ACE inhibitor. Basically, for maximum protection against further damage to your kidneys caused by high blood pressure, your nephrologist will want to reduce your BP as much as possible without putting you at risk of fainting. This will be a BP that is lower than it would be for someone without kidney disease. On the other hand, it should be said that the benefits of going below 130/80 are very minimal. Sometimes, blood pressure is treated down so much that it has a significant negative effect on quality of life of the patient. In addition to this information, please refer to the Hypertension Notebook for more complete coverage on hypertension.

Dietary restrictions. A lower-protein diet is commonly prescribed to patients who have more advanced renal failure (often referred to as pre-esrd). However, the use of a low-protein diet in mild to moderate IgAN is controversial, as there is no solid evidence that it has any value, and in some cases, it can actually be harmful (might cause growth retardation in children). Your nephrologist will tell you if you need to be on a low protein diet. If you are hypertensive or have edema, you may be asked to reduce sodium intake. An actual renal diet (low protein, low potassium, low sodium, low phosphorus, high calories) is not required until IgAN has progressed to more advanced renal failure. The purpose of such a renal diet is not to delay progression of IgAN, but mainly to minimize the uremic symptoms of chronic renal failure (which may or may not extend the time until dialysis is needed). Unless you are specifically told to restrict something in your diet, there is no need to do so. There is no evidence that any food causes or affects IgAN, however, some people do believe an antigenic diet may be useful, and some nephrologists can be found who will suggest it (this is not considered mainstream medicine at present).

WARNING

Patients are cautioned that you need instruction from a renal dietician to be on a low protein renal diet, as there is much more to it than merely cutting back on protein. Also, contrary to what many would assume, a low protein diet is not a synonym for a vegetarian diet. There is always a risk of malnutrition with low protein diets. Malnutrition may be hard to reverse in more advanced renal failure. Whatever you do, do not embark on a low protein diet, vegetarian or otherwise, without checking with your nephrologist first. This is one area where you can actually make things worse for yourself. Patients with nephrotic syndrome may actually need supplementary protein. Lowering your dietary protein does not necessarily have a significant influence on proteinuria.

Fish oil. Fish oil has been commonly "prescribed" to many IgAN patients since the mid-1990's. As fish oil is an over-the-counter product that may have contraindications and precautions attached to it in the context of IgAN, please read our separate page on fish oil.

Vitamin E. The evidence in favour of vitamin E for kidney diseases in general has never been very strong, but there have been some studies which suggested that the antioxidant effect of vitamin E might be beneficial in chronic kidney disease. The suggested dose has been a 400 unit capsule per day. Until recently, vitamin E was also sometimes suggested for people with more advanced renal failure who experienced leg and foot cramps. The evidence supporting this use was never strong either, but it was commonly used for this purpose. A recently-published study (in late 2004) not in the context of kidney disease suggested that daily vitamin E at 400 UI or more may actually increase the overall risk of dying. So, it may not be just another harmless supplement as was previously thought. It is not clear as yet how this will affect its use, but it already seems to have dampened enthusiasm for megadoses of vitamin E. My personal feeling, for my own use, is that it is probably best to get vitamin E from food and stay away from supplementary vitamin E (the small amount of vitamin E in multivitamins is not in question at this time). We recommend that you ask your own doctor about this.

Alcohol restriction. Opinions vary on this subject, but generally speaking, patients may be advised to drink alcohol only moderately. Heavy drinking is injurious to the kidneys and may actually worsen IgAN.

Smoking cessation. You will undoubtedly be asked with some insistence to stop smoking. There is steadily increasing evidence that smoking directly contributes to damaging the delicate blood vessels that form the glomeruli, even in people who do not have a chronic kidney disease. Make no mistake, cigarette smoking is an independent risk factor for progression of inflammatory glomerular diseases such as IgA nephropathy.

Exercise. If there are no other medical contraindications to exercise, nephrologists usually recommend a moderate-to-vigorous exercise program that stimulates the cardiovascular system, such as walking, cycling (stationary or otherwise), etc. Because high-impact exercise can worsen proteinuria and/or hematuria, if applicable, you may be advised to avoid those (unlikely unless your proteinuria is heavy or your hematuria is visible). You may be advised against heavy contact sports, due to the possibility of an impact that might cause direct injury to a kidney. For most patients, there will be few restrictions, if any. Even patients on dialysis are expected to exercise if they can, and some people with transplanted kidneys practice competitive sports. The best policy is to ask your nephrologist. If you know that a certain activity causes you to have visible blood in your urine, it may be reasonable to consider a different type of activity.

Other symptomatic treatments

Heavy proteinuria. Heavy proteinuria is usually defined as greater than 3.5 grams per day. It's not really very common with most IgAN, but it does happen. If your proteinuria is at that level or approaching it, your nephrologist will almost certainly want to treat that specific problem with oral steroids - usually prednisone, but there are others. This is because heavy proteinuria itself causes symptoms. These are generally grouped under the term "nephrotic syndrome". Treatment with steroids may be initiated even at a lower level of proteinuria if your nephrologist feels it's appropriate for you. Heavy proteinuria that does not respond to steroids may have to be treated with a stronger immunosuppressant such as Cellcept. Many nephrologists are beginning to use drugs like prednisone and/or Cellcept at lower levels of proteinuria. However, We should point out that this use may or may not be justified based on current evidence. The side effects of these drugs can be severe, and at some point, they may be worse than the disease being treated. It's important to note that proteinuria itself causes loss of erythropoietin, iron, and transferrin, and this is one reason why patients with nephrotic syndrome (heavy proteinuria) may become anemic.

Anemia. Anemia means a level of hemoglobin (red blood cells) that is too low. Symptoms of this are generally unusual fatigue and getting easily short of breath on minor exertion. Anemia from IgAN generally happens later on, when chronic renal insufficiency is more advanced. It happens because the kidneys reduce their ability to produce a certain hormone that signals the bone marrow to produce more red blood cells. It is treated with what most people refer to as EPO (short for erythropoietin). Current brands of synthetic EPO are Eprex, Procrit, Epogen and Aranesp. These drugs are extremely expensive, and their use is usually only justified (and covered by drug plans) when hemoglobin or hematocrit in your blood work reaches down to a certain specified level. It is theoretically possible to restore hemoglobin levels to normal levels, but in practice, this is never done, because it would greatly increase the risk of excessive blood clotting and, it causes high blood pressure. Moreover, clinical trial results reported in late 2006 have suggested that improving hemoglobin too much increases the chances of death. As a result, anemia is only treated up to a certain practical level of hemoglobin. These levels vary from country to country, and whether you are pre-dialysis or on dialysis. We would suggest you ask your nephrologist about it if you have advanced chronic renal insufficiency and you are especially tired or easily short of breath. It's important to note that medical science is not perfect. Sometimes, actual treatments may cause anemia. For example, while ACE inhibitors and Angiotensin II receptor blockers (ARB) are the most used blood pressure medications at present for the treatment of chronic kidney disease, they may themselves cause anemia (in about 5% of cases, this fall of hemoglobin can be quite profound, so, it's something to watch out for). If the patient also happens to have heavy proteinuria, which itself causes lower hemoglobin, it is easy to see how in some cases, a patient who has both nephrotic range proteinuria and who is on an ACE inhibitor or an ARB (or both) could become much more anemic than the degree of chronic renal insufficiency would suggest. Use of low-dose daily aspirin to prevent a heart attack or stroke might also contribute to anemia due to gastro-intestinal bleeding. It's very important to correct anemia, as it can eventually add congestive heart failure to your list of health problems. Heart failure itself leads to chronic renal failure. Luckily, anemia can be treated effectively.

High cholesterol. Statin drugs (like Zocor, Lipitor) are prescribed to treat the high cholesterol that is very common in chronic renal insufficiency patients, and in patients who have heavy proteinuria. As a bonus, there is some evidence emerging that statin drugs may help with proliferative and inflammatory kidney diseases.

Investigational treatments

These are various treatments that have or are being evaluated in prospective or clinical trials, or are increasingly being tried in clinical practice. There have been various degrees of positive, negative and inconclusive results. Generally, for common slowly-progressive IgAN, any positive results have been marginal at best, and all things considered, the treatment may be worse than the disease. We recommend you follow the advice of your nephrologist about these (but do ask questions, as some are more aggressive in their approach to IgAN than others). Also, be aware that while the risks versus benefits equation of any investigational treatment may favour no treatment for slowly-progressive IgAN, the balance may tip the other way in the case of rapidly-progressive IgAN. Also, patients in nephrotic syndrome usually require some of these treatments in order to reduce proteinuria to a more acceptable level (most often corticosteroids, like prednisone, and if that isn't effective, other immunosuppressants such as Cellcept).

Corticosteroids. These are oral steroids like prednisone and prednisolone. Current investigational treatment is for alternate day dosing (approx. 50-60 mg) (for the purpose of reducing the sometimes severe side effects that accompany long term oral steroid use). So far, there have been conflicting results, and no clearly positive results in terms of slowing the progression of IgAN. This is a different matter than using steroids for nephrotic syndrome and for more aggressive rapidly-progressing IgAN, which is now considered to be standard practice in these cases. We suggest you consult your doctor on whether alternate day steroids might be considered in your case.

Immunosuppressants. These are the same immune system suppressive agents that are used in transplant patients to prevent organ rejection. The main ones being used in the context of IgAN are Imuran (azathioprine), CellCept (mycophenolate mofetil), cyclosporin as well as Cytoxan (cyclophosphamide). At present, there is no definitive evidence that suppressing the immune system helps to slow down the progression of IgAN. However, some of these drugs are increasingly being used in more aggressive cases of IgAN, especially the rapidly-progressive form. As with steroids, the side effects may be worse than the disease when it comes to common, slowly-progressing IgAN. Again, this is something you may want to discuss with your nephrologist. Some patients have reported minimal or no side effects with CellCept in particular, while others have not been able to tolerate it at all. In transplant patients (where IgAN recurs to some degree in at least half of patients), regular use of immunosuppressants for anti-rejection purposes has not shown any benefits in terms of preventing the recurrence of IgAN in the transplanted kidney.

Tonsillectomy

General. This remains a very controversial, and sometimes contentious subject among IgAN patients. There was a flurry of interest in tonsillectomy (removal of tonsils) as a treatment for IgAN in the early to mid-1990's. This was given further impetus around 1995 when public access to the Internet became common.

Theory. The idea behind this is that some IgA proteins originate in the tonsils, therefore, taking them out might reduce the number of circulating IgA complexes that reach the kidneys. One problem with this theory is that many other sites in the body produce IgA complexes, and there is other evidence that reducing the levels of circulating IgA complexes doesn't appear to have any effect on the long term progression of IgAN. There have been some observational studies or retrospective studies that have shown some positive results, and others no positive results whatsoever.

Current status. Rather than provide this website's opinion, the following is quoted from Yuansheng Xie, Xiangmei Chen, Shinichi Nishi, Ichiei Narita and Fumitake Gejyo, Relationship between tonsils and IgA nephropathy as well as indications of tonsillectomy, Kidney International, Vol. 65 (2004), pp. 1135-1144.

"Unfortunately, studies regarding tonsillectomy were performed until now in a retrospective style and little information has been available about the side effects or complications of the operation in IgAN patients. In order to further clarify the clinical efficacy and security of tonsillectomy, randomized prospective controlled trials are necessary because of the high degree of variability of IgAN. "

Your nephrologist and tonsillectomy. Since there is no real evidence that having a tonsillectomy improves the long-term outcome of IgAN, and it is not considered an effective treatment in most cases, nephrologists may or may not agree with patient requests to recommend one. Some patients do manage to have a tonsillectomy performed via a referral to an ear-nose-throat specialist, especially if there are problems with tonsillitis anyway.

Alternative medicines and treatments

Since there are no studies to support treatments from the fields of homeopathy, naturopathy and folkloric herbal medicines, and much disinformation and commercial promotion (this is not to say that pharmaceutical companies don't engage in promotion as well), we do not provide information on these. We strongly advise caution with medicinal plants, as some may prove to be harmful at worse, and useless at best. Possible complications of using herbal treatments of various can kinds in the presence of kidney disease are: tubular necrosis, acute interstitial nephritis, Fanconi’s syndrome, hypokalemia or hyperkalemia (potassium that is too low or too high), hypertension, papillary necrosis, chronic interstitial nephritis, nephrolithiasis, urinary retention, and cancer of the urinary tract. It's not impossible that there might be some value in some alternative medicinal treatments for some things. After all, many pharmaceuticals are synthetic versions of animal or plant-derived substances. Even the ACE inhibitor many people with IgAN take daily was originally derived from the venom of the Brazilian pit viper. The problem with alternative treatments is simply that we don't have enough evidence for good or harm, and there is so far no known substance that will cure IgAN or restore the kidney function of someone on dialysis. So, while there is some element of risk in any treatment, even FDA-approved drugs, when you ingest alternative medicinal treatments, you're off out there on your own, conducting a clinical trial of one ( an n of 1 trial). Another problem with alternative treatments is that there is virtually no control in how they are manufactured and marketed, so, you don't know how much of the active substance is actually in the product, nor do you know what else might be in there along with it.

Complementary treatments

There are some kinds of treatment which may be harmless and complementary to conventional medicine. One such treatment that patients often ask about is acupuncture. It's possible that treatments such as acupuncture might be beneficial in promoting relaxation and combating stress, and who couldn't use a little more relaxation? Meditation is another example of a complementary treatment that might be beneficial, if only to relieve stress. These kinds of treatments are freely-discussed in our all of our discussion forums.

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