Sharing

[bally78]

I’m 41 years old just been diagnosed with IGA kidney disease which is quite rare. On blood pressure medication for this but the doctors are wanting me to trail a medication. Anyone else have this or any experience on this

[RoadRunner44]

What is IGA kidney disease please?

[lowraind in reply to RoadRunner44]

mayoclinic.org/diseases-con...

[RoadRunner44 in reply to lowraind]

Thanks for the link, I went online and have some understanding now. It's quite amazing how many kidney problems there are and how we all try and deal with them.

[bally78]

Mmmm. It’s something to do with the filters in the kidney they leak protein it’s a rare disease so I’m still trying to get my head round it

[RoxanneKidney in reply to bally78]

I haven't been officially diagnosed yet, but have been to Mayo. I am leaking protein too. How were you diagnosed? what test determined it was IGA?

[DaveThebe]

Also known as Berger’s disease, it’s not rare actually, it’s quite common. There’s a lot of literature on the disease.

[bally78]

Oh ok my doc didn’t mention it was called that

[RhenDutchess123]

I have FGN Kidney Disease...they sound similar...They are not sure how to treat it...Presents with High Blood Pressure and High Cholesteral...I was on Losartan for BP for many years..but about a year ago my Neph put me on Doxasozin instead and i do quite well on it...they believe it is an auto immune disease...The filters in the kidney become coated and they slowly die leaking excessive amounts of protein and red blood cells...I was told it could be a quick decline in kidney function...4 to 5 years to ESRD....but i have had it for over 20 years and i still have a GFR of 14 and am not yet on dialysis..other than the anemia i have few symptoms of CKD...Best Wishes and keep us posted..

[bally78 in reply to RhenDutchess123]

I hope you well. I new to IGA, my blood pressure is fine but apparently the blood pressure medication helps with the kidneys I’m also on Losartan. I didn’t present with any other symptoms but urinating at night frequently, hence why this was picked up or I may never have known I’ve been told it’s rare. But hopefully manageable

[Jason2233 in reply to bally78]

I was put on losartan 4 months ago. It seemed like my foamy urine was disappeared up un till couple of weeks ago. What do I need to do?

[RoxanneKidney in reply to Jason2233]

Get back to the doctor

[RhenDutchess123]

The Losartan contains a diruetic...i also did not have high BP...but the Losartan helps keep the inflamation in the kidney down...i took it for about 19 years but now it coats my filters and they changed me to the Doxasozin...I was also told it was rare...do you have Hyperparathyroidism ?

[bally78]

No not that I’ve been told. What is that?

[Bet117 NKF Ambassador]

Hi bally,

Sit tight with your new diagnosis.

Actually, IGA is more common than you think. It is an autoimmune kidney disease where your body produces anti-bodies or little particles which get in between the filters in your kidneys , inflaming them and causing protein to escape.

I don't have IGA but I do have Membraneous Nephropathy which is also autoimmune.

I am sure that it sounds a bit frightening - which is very normal, when anyone hears kidney disease, but to your advantage, it appears to have been caught early.

Like any kidney disease, it can't be cured, but the progression can be controlled with medication and diet.

Putting together a medical team who will not only communicate with you in basic terms and each other is essential.

A good nephrologist is key in this case as together you will put together a care plan that works best for you.

Keep track of your labs and bring them with you to appointments so that you can discuss any questions right on the spot. Bringing a family member with you to take notes would be great so that you can better focus on the discussion.

Taking your medication and letting the doctor know how you are feeling is also important. The BP medication is generally given to protect the kidneys as well as the first line of meds to control protein spilling. ( you didn't mention if you have high BP)

A diet low in sodium; between 1500- 2000mg per day is suggested. Meaning no processed foods, canned soups and meats such as cold cuts and certain cheeses. Limiting protein is next; eliminating red meats and making better choices such as eggs, chicken and fish.

Lots of fresh, fresh frozen vegetables such as cauliflower, onion, peppers and cabbage is also great as well as fresh fruits such as blueberries, strawberries and apples are also great along with whole grains and cereals such as Cream of Wheat which is high in iron.

Any foods which work to calm inflammation are great. Drinking water and eliminating dark sodas are also important.

Potassium and Phosphorous are also to be watched. Vegetables can be high in potassium and dairy high in phosphorus.

Your doctor or a renal dietician can guide you as to food choices and quantities which are appetizing and best for you.

Davita.com has a list of foods to get you started.

Remember that everyone is different and has different needs. Communicate well with your medical team.

I hope this gives you a bit of direction as to where to begin.

Please feel free to reach out to myself and any of the community members at any time as one of us will always reach back.

Stay positive !

Bet

[RhenDutchess123 in reply to Bet117]

Great job of explaining that !!

[Bet117 NKF Ambassador in reply to RhenDutchess123]

Thanks!

[RhenDutchess123]

A Biopsy confirmed my FGN...I live in the U.S...Wyoming

[Zazzel]

Hi There and welcome. Several of us have IGAN here. There are several groups on Facebook you can join which are specific for those with IGAN ( IGA Nephropathy). They might help you get more familiar with it.

IGAN can lay dormant for 20+ years then suddenly start causing issues. Many people have it their whole lives with only minimal deterioration while others have an aggressive version which can cause faster decline of function. I’m guessing you e had a biopsy as this is the only way to 100% diagnosis it although my nephrologist suspected for a year before I had a biopsy.

As Bet said, it affects everyone differently. Please make sure to Work with your health care specialists and if you can afford it, work with a renal dietician who understands IGAN. From personal experience, I listened to others who had different causes for kidney disease, other types of kidney disease and other stages. I started limiting my potassium, phosphorus and protein too much and have ended up with some health issues due to that. That’s why it’s important to have an individualized plan.

My nephrologist did not pit me on blood pressure meds until I had protein leaking as I originally didn’t have blood pressure issues. Certain blood pressure meds can help control protein leaking into your urine. If you aren’t sure exactly why they put you on it, have them explain the exact reason. I was originally put on a somewhat high dosage of Lisinopril, but have reduced it down to 1.25 mg. Others in the IGAN group also say they are on very low doses. I ended up having high blood pressure which went from high to low about a year after being diagnosed. During that time I reduced my potassium intake since I read it was helpful for CKD, but at my kidney function Stage I should not have done that. Now that I’ve increased my potassium, my blood pressure has regulated to normal. That’s why it’s important to have an individualized plan.

Bet did a great job of explaining it all, I just wanted to emphasize her point of it being individual to your specific stage and needs. Getting labs on a regular basis can help shed light as well on what’s going on. Learning what each lab result means and keeping track of your results can really help. I have a big excel sheet. I’d also keep track of your blood pressure. You said you don’t have high blood pressure now. Keeping it in normal range is very important in controlling kidney disease in general.

[Bet117 NKF Ambassador in reply to Zazzel]

Thanks Zazzel!

Gosh you are terrific; beautiful way of explaining this and suggestions.

We compliment each other.

Take Care of yourself..

In thoughts always.

B...

[bally78]

@bet117 thank you some great tips I generally have a good diet but occasionally indulge in sweet desserts. I need to begin to exercise.

[jaibo]

I have Iga disease too, I was diagnosed 1 year ago and my Nephrolog put me under Edarby 40mg for controlling BP and Mycophenolate Mofetill for modulate autoinmune system among other supplements like Vitamin D3, B Complex, and Iron my dietitian gave me. A Year after my leak of protein down up to 60% of the original amount and still hope to reduce It more. I do exercise every day for 50 minutes mainly walk and a little of strength to avoid losse of muscle. At the begining I was down and sad but now my attitude it turns 180 degrees because my progress. I hope you get better as soon as possible.

[bally78]

I’m hoping to pick up and do more exercise which in the winter months find difficult