Recently Diagnosed with IGA Nephropathy

[Anonymous]

I am a 40 year old male in very good athletic shape that was recently diagnosed with IGA Nephropathy after two opinions and a biopsy. So much for staying in shape? The biopsy confirmed 25% to 30% kidney scaring with renal function via GFR at 85% to 90%. Everything I read says that it is unknown how long one has until dialysis or transplant. After pushing my doctor he stated 5 to 20 years. Seems to broad to me. My last consultation with the Nephrologist was to discuss treatment options (Steroids - Predisnone, Fish Oil, and Low Protein Diet) which as I read further does not guarantee the slowing of the disease. After a weeks vacation and reading the pros and cons I am leaning towards the steroid treatment.

Is there anyone out there who has a recommendation or is experiencing what I am going through?

Mark

[Beth Witten MSW ACSW]

Here's a report that includes information on what the authors believe should be done in clinical practice (see page 4) as they and others are studying what treatments will slow the progression of loss of nephrons. This is their recommendation:

"In conclusion, while waiting for more specific and effective treatments for so-called ‘benign IgAN’, and given the difficulties arising from the polymorphic clinical, laboratory and histological picture of IgAN, we suggest (Table 1) starting with an ACEI or ARB (and then a combination of both) and subsequently adding our 6-month steroid regimen in the case of patients with persistent proteinuria of 1g/24h. While awaiting the results of our study [32] and other studies, patients with more progressive forms who are resistant to previous treatments (including steroids) could be cautiously treated with the addition of cytotoxic agents."
http://ndt.oxfordjournals.org/cgi/reprint/21/12/3357

[DoriSchatell]

The biopsy confirmed 25% to 30% kidney scaring with renal function via GFR at 85% to 90%.
It's hard to predict how long YOUR kidneys will last. If I were you, I'd ask my nephrologist how often to have a serum creatinine drawn to see what the slope of decline in kidney function is. This will, over a few years, give you a much better idea of how fast (if at all) the disease is progressing.

In the meantime, please read our section on chronic kidney disease to learn ways to protect your kidney function: http://www.lifeoptions.org/kidneyinfo/ckdinfo.php.

[3KIDNISE]

I Was 28 When I Found Out I Had The Disease. I Only Had 18% Kidney Function When I Was Diagnosed. So, I Had A Transplant Right Away. It Will Be 6 Years In August. I Would Not Worry Too Much. Just Get Tested. I Would Try And Stay Away From Steroids... I AM 6 POST TRANSPLANT AND I TAKE 6MG OF PREDNISONE AND 6000MG OF FISH OIL. I THINK THE FISH OIL WORKS GREAT... SINCE THE TRANSPLANT, I HAVE LOST 60% OF THE NEW KIDNEY FROM IGA ATTACKING THE KIDNEY. BUT ALL IS WELL. LET ME KNOW IF YOU WANT ANY OTHER INFO....

[Unregistered]

Hi Mark,

I am 23 yrs old, and started working for the National Kidney Foundation shortly after receiving a transplant due to kidney failure from IgA. Please contact me at rschreibman@kidneywdc.org with any questions. I know what you are experiencing is frightening and shocking, and I am happy to offer you some helpful information and resources.

Hang in there,


Rachel

[Unregistered]

Hi

I was recently diagnosed with IGAN and am on ACEI and ARB's. I had a protenuria level of 3gm before I started with the medication . It then reduced to 450 mg but later increased to 982 mg . My doctor now has prescribed steroids and Cellcept an Immunosuppresant. I will be on steroid for 2 months and cellcept for more than a year.

I heard that the norm is to take steroids for 6 month. When I asked the doctor about this he told that as my family has a history of diabetes i can't be on steroids for long.

I am totally confused about going ahead with the doctors regimen.


Pleaseeeeeeee advice.

Thanks
30 year old male

[Beth Witten MSW ACSW]

Here are websites you may want to read about IgA nephropathy:
-- IgA nephropathy fact sheet at http://www.nlm.nih.gov/medlineplus/ency/article/000466.htm
-- Another IgA fact sheet at http://kidney.niddk.nih.gov/kudiseases/pubs/iganephropathy/
-- Generic fact sheet on glomerular diseases at http://kidney.niddk.nih.gov/kudiseases/pubs/glomerular/

Treatment usually includes anti-hypertensive medications as well as steroids and CellCept. I'd suggest that you ask your doctor why he/she is prescribing steroids for 2 vs. 6 months. It may be because steroids have negative side effects, including mood swings, weight gain (due to increased appetite), and difficult to control blood sugar in people with diabetes. In fact, some transplant recipients who take steroids long-term develop steroid induced diabetes.

In case you're interested in research on IGAN, here's a website that lists clinical trials that are recruiting, in process, or completed:
http://clinicaltrials.gov/ct2/results?term=IgA+nephropathy

[phyljack1]

There is a very good IgA message board at http://health.groups.yahoo.com/group/iga-nephropathy/

[Beth Witten MSW ACSW]

Hi Phyljack1,

Thanks for sharing that helpful link.

[Mom of Tanner]

My 11-yr-old son was diagnosed with HSP nephritis in November after a classic onset: acute arthritis in June '08; severe gastrointestinal illness starting in July '08 that lasted more than a month and resulted in a 10-day hospital stay with 7 days of IV feeding w/ some purpura (not the typical dramatic purpura). He was left skeletal and weak at the end of that nightmare. It was in November, when he was taken by ambulance from his pediatrician's office in Flagstaff to Phoenix Children's Hospital with nephrotic range proteinuria and Coke-brown foaming urine and hypertension, that we received the diagnois of HSP nephritis. Biopsy confirmed IgA, but clinical symptoms clinched the HSP nephritis diagnosis. (BTW, there were crescents in the biopsy, but only at about 12%) At that time, his neph commented that we might in time add the IgAN diagnosis, but she wasn't prepared to at that time. Tanner completed his prednisone treatment/ taper mid-April, his lisinopril has been reduced to a supportive dose (1.25 mg/ day) and he is on a 2-yr course of CellCept, 1500 mg/ day. His hypertension is under control and he's typically just trace or no protein these days, with microscopic hematuria every darn test. He had his first infection in June, which resulted in gross hematuria (tea-colored urine) and 1+ protein spilling that progressed to a foamy toilet, but I didn't have a stick to see how high his spilling reached before leveling out the following week. His regular neph is on maternity leave and the doc we saw at PCH last week said that his infection reaction is consistent with IgAN, rather than signalling an HSP relapse. So, my question(s): should I take this as a confirmation that he does indeed have IgAN, or does it bear further discussion and testing when his neph returns from leave in September? Does anything about the indicators present at onset suggest his probable prognosis? While I know the hypertension, severity of gastro attack, and nephrotic range proteinuria all put him in a high-risk category, is it offset by the fact that he had so few crescents? Does anything in particular raise a red flag or put you at ease re: his situation? BTW- after a REALLY rough year, he's finally feeling good, looking like himself (prednisone weight is gone), but we've recently noticed major mood swings, which are more typical of when he was tapering the prednisone. We will put it down to pre-pubescent joys, but are curious if mood swings are a typical IgAN symptom?

We would appreciate any light that can be shed on this whole new kidney world we find ourselves in.

Cheers,
Arizona Kidney Mom

[Beth Witten MSW ACSW]

We are not doctors, but do our best to find resources to help people know the questions to ask their doctors.

I found a 2007 article in the journal Clinical Pediatrics of a 20-year follow-up study of children with HSP glomerulonephritis. The study was conducted at University of CA - Davis (Dr. Lavjay Butani) and Phoenix Children's Hospital (Dr. Bruce Morgenstern). You can read the abstract here:
http://cpj.sagepub.com/cgi/content/abstract/46/6/505

Those who are more likely to have HSP glomerulonephritis are young males. Many children have have one episode but some have repeat episodes.

Although it appears that HSP glomerulonephritis and IgA nephropathy have similar symptoms and clinical findings, but there are some differences. I'd suggest that you discuss with your son's regular nephrologist or Dr. Morgenstern if he's still at PCH the similarities and differences in diagnosis of HSP GN and IgAN, treatment, what the future might hold with either diagnosis, and things you and your son can do to protect his kidney function, including recognizing symptoms and seeking treatment as quickly as possible, medications to take and to avoid, etc.

Here's a government publication on HSP glomerulonephritis:
http://kidney.niddk.nih.gov/kudiseases/pubs/HSP/

Here's a government publication on IgA nephropathy:
http://kidney.niddk.nih.gov/kudiseases/pubs/iganephropathy/

[clarkey28]

i am 28 years old and i was diagnosed with iga kidney disease 8 years ago. i am on 7 blood presure pills a day (approvel ,metroprolol,doxas and adalat retard)in which i take religiously and i have recently been diagnosed with gout which is da most painfull thing i have ever hadwhich i take no medication for i just drink 3 litres water a days and munch cherrys and it aint 2 bad. Just the past couple of years i have been getting extremely fatigued to the stage where i had to sleep in my car at lunch time, i felt like i had a hangova every day and poor concentration, tight chest and strained eyes and pale skin and just a general look of unwell.I had my kidneys checked and they have remained the same as when 1st diagnosed. i had iron checked and i was told i was very slightly anaemic i started to take iron tablets 45mgs 1 a day which really helped but i slowly felt the fatigue creepin back up on me so i thought maybe i have took to much iron and its doin opposite so i stopped 6 weeks ago i aint got a clue wat to do, i started 2 weeks ago takin them again 65mg once a day but it aint helped at all . its really messin up my life. is there anything i can do or take to fight this tiredness which is ruining my job and my relationship, i know fatigue is a main symptom of iga but is there any cure or is da rest of my life gona be 1 big zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz.
HELP MEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE!!!!!!!!!!! !

[DoriSchatell]

Hi Clarkey,

You may think we're a little nuts for suggesting this when you're already fatigued, but believe it or not, exercise can make a big difference and help you have more energy. Your kidney function hasn't changed. And you're only a little bit anemic (please take the iron as prescribed--your body needs it as building blocks to make red blood cells, so even if it doesn't give you more energy right away, it's still important). So, that suggests that there's something else going on (maybe the IgA itself) that's causing your fatigue. It can be that since you're tired, you've stopped doing anything physical for fear of "using up" your energy.

But the body doesn't work like a regular flashlight battery, where you use up the energy in it and then it's out. It works like a RECHARGEABLE battery--and exercise is what can help recharge you. That dosen't mean you should go out and run an Ironman triathlon tomorrow. But if you start doing just a little (walk around the block or up one flight of stairs, for example) today, you may find that you can do a little more tomorrow, and a little more the day after that. Talk to your doctor, and check out our exercise resources here: http://www.lifeoptions.org/catalog/catalog.php?prodCat=booklets.

Depression can also cause fatigue and loss of energy--and exercise can help this, too. It's worth a try!