A very fit healthy person diagnosed IgA nep... - Kidney Disease

Kidney Disease

6,809 members2,746 posts

A very fit healthy person diagnosed IgA nephropathy out of blue !

Maryam63 profile image

Hi to the amazing people in this group. My partner has been diagnosed very recently after two month of stress and fear of unkown that he has kidney disease and been confirmed with kidney biopsy of being IgA nephropathy. He is 37 year old, very fit runner, super active person. Only gets hey fever and bad allergies from childhood. No other meds or conditions. He does trail running over mountains. So you can see this condition was totally out of blue for us. During a random checkup at GP we found out his proteinuria is significant and initial eGFR was 69. His 24hr urine showing 1.3 gr protein leak, creatinine 106, Gfr of 70-80 fluctuating, all other tests normal. We will see his nephrologist in few weeks but been informed of the preliminary results. I am quite concerned for his future, how is prognosis? Is treatment effective? We are on the way to have our wedding and planning to have babies soon. Is this can transfer to our kid? And how he can keep kidney function normal, he is very fit and we usually do alot of semi athletic training. Is this condition gonna affect his future? Please share me your thoughts and experience.... i m very upset about it though he is quite positive to be alright. Any thoughts and suggestions for diet appreciated.

Thanks so much

19 Replies
KidneyCoach profile image
KidneyCoachNKF Ambassador

I'm surprised nobody has yet replied to you. I don't have much information on IGANephropathy. Have you googled it yet? I'm certain they have an organization of their own. So far the results seem fairly normal but I don't know how quickly it progresses. Definitely get in to see a specialist. Write down your questions and concerns so you can go over them with the doctor. It is important they listen to you and that you understand the responses. Check out AAKP, NKF, AKF and especially kidneyschool.org I've been on dialysis so long its hard for me to remember the tips for those who are in Stage 1-2 kidney disease. I will look for some answers and try to get back to you. In the meantime don't panic. Take a deep breath and remember this is not the end. You are not alone. Blessings

Maryam63 profile image
Maryam63 in reply to KidneyCoach

Ohhh so nice of you for ur nice reply. Yes i was surprised too why there was no reply yet, i m sure there are some people here in the same condition... i wanna know how they managing it

KidneyCoach profile image
KidneyCoachNKF Ambassador

I did a quick search to refresh myself with IgAN it is also called "Berger's" disease. Best thing to do is control blood pressure, maintain good weight, don't smoke, drink plenty of water. All of these your partner obviously already does. It is a type of auto-immune disease and although there are some genetics involved its not yet known if it can be genetically passed to offspring. There is no cure but most often patients received ACE or other high bp meds to protect the kidneys. Here is an organization in the U.S. igan.org And as I thought a great amount of info through NKF at kidney.org/atoz/content/iga... I hope this can help to ease your mind. I think one of the stats were a 50% survival rate at 30 years post diagnosis. But those are statistics and you and he are individuals so don't let that bring you down. Hope this helps. Blessings

Maryam63 profile image
Maryam63 in reply to KidneyCoach

Thanks so much for ur great reply. I will look at the links. Yes he has no other condition but they are looking to treat him now with prob one of those high blood pressure medication. Yes they re saying no actual cure but the dr is quite optimistic that he will be fine in long term. Is a less meat diet can make it better? And is there many people who kept their GFR still high over long term ?

treesarecoo profile image
treesarecoo in reply to Maryam63

I haven't had the biopsy to confirm IgA nephropathy, but both my nephrologist and I are pretty sure that's what I have. Fortunately, I am in stage 1 as my GFR is still normal, however I am losing anywhere from 300mg to 800mg of protein as well as blood from my urine daily. I have known about this condition for about 4 and a half years and have been stable since then (thank God). I have a website and youtube channel where I talk about how to care for the kidneys and what I do to keep myself stable. I am not giving medical advice, but you are welcome to visit me there. I have done thousands of hours of research about the kidneys and IgA nephropathy and I am also a nutritionist with 20 years of study on nutrition and health. Hope this helps! nicolesnaturals.blog/

youtube.com/channel/UCQE8al...

Hello. First of, Really sorry to hear that.

I am 25 years old and even I was recently diagnosed with IGAN 7 months back. Unfortunately, when I was diagnosed, my gfr was 24 and right now it has fallen to 15.

In my case, the disease seems to be very aggressive. Just like your partner, I used to be a very fit individual, I used to play soccer, workout in the gym, and was pretty much a normal 25yo.

As others said, you can slow down the progression of this disease. Make sure Blood pressure is in check and avoid salt.

I am not an expert in this disease, but you can connect with others who have had this disease. Search for IGAN Foundation and you can checkout their website.

Hey thanks so much for ur comment. Sorry to hear your are struggling with it too and so young ... it is very disturbing. His GFR is fluctuating between 69-80 but not sure how long is gonna be like that. We will see his specialist today and i have lots of questions about this condition as it appears to have different staging... i hope u feel better. Yes we trying to find better diet solutions. Its very hard as it means restriction in ur normal food and normal activity. But if its useful it will worth it. Sure i will search for it.

Cheers

Good luck. And hope everything turns out well. Takecare

My diagnosis of IgAN last August was very similar to yours. I'm 46 and mine came on suddenly over a few months max, did it's damage and has so far stabilized. I was just going into stage 4 when I got diagnosed. My eGFR fluctuated sinking all the way down to about 21 and then steadily over the last few labs when from 23 to now 28. I'm hoping this trend keeps up for at least a little longer.

They found no sign of crescents in my biopsy fortunately, so I'm not doing the steroids or immunosuppressants. At this point I'm just trying to get my count over 30 so I can try and qualify for a OMS721 trial screening coming up.

An update to the situation:

We had a specialist visit yesterday and he explained something about the staging of the histology result of biopsy that shows this can be not very aggressive. Although his proteinuria is very significant , so they started Quinopril for him and specialist see him in Three months! He said no diet or excercise restriction needed ! Just wanna know if anyone else is on this medication? How does it respond to u? And has it actually worked to bring down protein in urine ? Any diet changes helpful his Gfr is 70 and i m worried it get worse over time. Dr was quite optimistic about his prognosis but i cant beleive it all :((( please help me with ur advice or suggestion ....

Hi Maryam,

My son has IGAN and like the Exterminator the aggressive kind. He was also diagnosed at Stage 4 four years back when he was 28years old and was perfectly fit before that. So glad that they caught it early for your partner. To address proteinuria ACE -Is (or ARBs) are often prescribed. And it appears to be one. Unfortunately doctors don’t consider diet to be an important part of the treatment plan. But as you will see from others on this site diet is key to slowing down progression and improving. There is some research that shows gluten free, alkaline, plant based diet has benefits. That said at an early stage the options maybe wider. He should of course avoid red meat, colas and smoking and certainly reduce alcohol. You should search for posts by Mr Kidney and others on the importance of diet in kidney disease and this is relevant for any type.

This is a great place to get advise. You can also check out IGA Nephropathy groups on FB and IGA foundation of America. It’s founder Bonnie Schneider is very active and is trying to move forward treatments for IGAN. They also have an FB page.

Wish you and your partner the very best!

Thx so much SN23 :) great advice. Sorry to hear about your son that it was an aggressive form. How he s doing now? Yes we glad we caught it relatively early but its very stressful knowing anything can be in future! He is on medication now but yes unfortunately he is abit stubborn about diet and the dr made it worse by saying no special diet needed! I will def look into those websites and posts as i m trying to make some changes for his diet to prevent any further progression as far as we can.

Thx heaps

Hi Maryam63,

Your partner is blessed having a wonderful wife-to-be looking out for his health and researching for him. He will need gentle reminders that although the doctors feel his outlook is good, he does indeed have a chronic condition that needs to be taken seriously so that it won’t progress into something worse. It sounds like between you and his doctor you are in good hands.

I also have IGAN, but not the aggressive type. Everyone have you great advice on websites and diet. I just have a few things to add.

First, it’s great the doctor was aggressive and immediately put you on blood pressure medication. Hopefully he is having you do bloodwork again in 2to 3 weeks to make sure there are no issues. You may notice a slight drop in kidney function, but it should be minor and if it can help stop or reduce the proteinuria that is the goal. If he is not having blood work done within a few weeks, I would push him to do so. My nephrologist insisted upon it. Several of us have found very low doses of bp medication help, so if there are any side affects of the bp drug, don’t get too upset, your doctor might recommend a lower dose. I kept reducing mine until I stopped having dizziness and it still helped reduce my proteinuria. Of course discuss with your doctor before attempting that.

The next thing is controversial. Some doctors will tell you to reduce protein, others won’t. The general rule of thumb if you do is to consume .8 to 1.2 kilograms of protein per body weight per day. Being an athlete, you might want to look at his protein intake. If he is drinking lots of protein shakes, protein bars and consuming meat at every meal, you should consider cutting back some. Overloading with protein is really stressful on the kidneys for Kidney patients, especially those with proteinuria. Certainly limit red meat intake and eat only grass fed which is higher in Omega 3.

Fish oil has been shown to help those with CKD, so if he isn’t taking it, consider that and speak with his doctor. Always talk to his doctor before adding any supplements.

I found it curious you mentioned allergies.my nephrologist believes my IGAN is caused by my many food and environmental intolerances. This could perhaps be the cause of your partners if they have not come up with any other reasons. Regardless, of that, it s very important to avoid things that cause allergies or intolerances. They can send you into a flare as can getting sick. This is an autoimmune disease and any illness can cause a flare.

I’m assuming since you are both active you eat pretty healthy with lots of fruits and veggies and avoid fast food and processed foods. They contain high Omega 6 ratios. Although Omega 6 is needed in the body, a high ratio of Omega 6 to Omega 3 can cause inflamation. It’s a popular topic out there so you can find lots of sites talking about the benefits of Omega 3. It’s important when choosing the correct oil to cook with, so you might want to research that.

There are several research studies currently being done on IGAN which is good news. As SN23 said, check out the IGAN.org website to learn more about those if interested. They are actively recruiting participants.

Let us know if you have any more questions. Feel free to reach out to us in messenger if needed.

The docs will have to figure out if the it's gene related which the literature supports that theory though not written in stone. There are many factors that contribute...he's just doing some thing that is allowing the gene to express itself. Males are 2x more likely to develop it and is Diagnosed in after 30 year olds ususally.

"They" say there is no cure but that certain meds will slow the progress of the disease. How was he feeling before he found out? Did he have symptoms? Some go thru life not even knowing they have it and some develop more severe cases. Diet is huge and I'm talking plant based...it's the only way he will get rid of the inflammation that no doubt contributes to this process.

Healing comes in many forms and I'm a big advocate of visionary healing. I was told my kidneys were shot but would not accept that there was nothing I could do. I went straight to raw food vegan diet with soy protein powder suppliment (it's a myth that soy messes with men's testosterone) since it's a complete protein ... basically do smoothies 3 or 4 times a day and snack on good carbs (no nightshades). I add virgin olive oil to my smoothies: must get the carbs, fats, & protein needs. One should watch how much protein they are intaking per meal...kidney don't like massive shots of protein at one time. And it should go without saying non-GMO/organic. People can accept their situation or they can change.

I would also like to address how docs and nurses say you don't need to change your diet. To me this is the most ludicrous advice on the planet. Unless they are already vegan I always advise change of diet...it's everything. Watch "The Game Changer" on Netflex. I've been teaching that stuff for 2 decades.

Let us know how he's doing...

Hello Maryam 63, I myself have only recently been made aware that I have CKD and have been researching into this disease. The question that interest me most with my condition is the timespan and unfortunately no one as yet suggested what it might be or even hazard a guess for you. I do understand that everyone is different etc. but having even a vague idea of how long it takes the disease to progress would be helpful. To give you one example, my first GFR reading was in November 2010 of 79 and my most recent reading in January 2020 is >90. Although there is no cure, it seems that the condition doesn’t always deteriorate. All the other GFR readings over the ten years have been in the 70s and 80s( about 20 readings).

Maryam63 profile image
Maryam63 in reply to Alara1

Hi Alara1 thanks so much for your reply. This is very positive and rewarding to know that you improved that much. This is very interesting.congratulation to you. It is very frustrating when you dont know whats the actual prognosis. Just have few questions if u dont mind... Have you done a biopsy to diagnose the disease? Have u had proteinuria and got treatment for it ?.... my partner atm is on quinapril and he had significant macroproteinuria which now responding to this medication well, already came down by 50% ( still on macroproteinuria but alot less than start ) and GFr not much changed about 78 or 76. So still improving but not sure how far and if not detoriate over years...

Alara1 profile image
Alara1 in reply to Maryam63

Hi Maryam63, I have not had a biopsy done. I do remember having had a 24 hour urine collection many years ago but can’t seem to find the results.

Unfortunately, protein is usually slightly elevated in urine. My failed urine albumin results are as follows: Jan20 = 29, Dec16 = 29.5, Nov16 = 21.5, Mar14 = 30.61 and Feb14 = 28.11. Normal range (0.00 - 20.00). I have never been given any treatment or medication.

Maryam63 profile image
Maryam63 in reply to Alara1

Hey thanks so much for ur reply. It looks like u had a very mild touch of this disease which is very good. His proteinuria was significantly higher and even now that came down its around 500 mg ( max normal is 20 ) ! So we are in abit different setting. He s on treatment which helping but not sure how long and what to expect ... hope these positive results happen to us too ... thx so much for sharing :)

Lupiegrl profile image
Lupiegrl in reply to Alara1

I will first say I don’t have much knowledge about any of this. But I was diagnosed with Lupus a couple years ago along with several other autoimmune diseases. I’ve also gotten some pretty large kidney stones. I had a uterine ablation done a while back and since then have had a constant UTI. Even after 2 rounds of antibiotics. Went to doctors the other day because my legs were all swollen again and told him my urine is still dark and has a strong strong smell so he had me do a urinalysis and said they would let me know. Well I went on my patient portal and saw the results. Blood in urine still, protein still in there, and there were other things off I just can’t remember what. I’ve felt for awhile that the Lupus was going after my kidneys and have told every one of my doctors this. Not one has taken me seriously. I thought maybe when they were doing one of the 3 surgeries I had in 4 days to blow up the golf ball sized kidney stone that maybe since they were in there they might take a biopsy of my kidney. Especially since I had Lupus. But of course they didn’t. Whenever I mention it they say then bloodwork came back fine. But when I went to read about it online the first thing I read was that is usually will come back normal until it gets really really bad. Sometimes when it’s almost too late to do anything. Besides this UTI. Have had forever now I’ve had several more previously. My kidneys are always hurting. My urine is always dark. I’ve had kidney infections and of course the kidney stones. Am I just being paranoid? Or am I justified in thinking something could be going wrong? I’m getting so tired of not being listened to. I’m only 45 and I have no quality of life. I live in constant chronic pain that they wouldn’t allow a dog to suffer with but have no problem with me never having any relief from it. I’ve got pneumonia right now. It really is just one thing after another.

You may also like...