I've been told I have IgA nephropathy

[zide]

So, I saw my specialist yesterday and came out with more questions than I went in.

All I know is I have to take more blood pressure meds and there is no cure.

They tried telling me the pain in my kidney and my swollen ankles are not symptoms yet when I look into this myself it is.

The BP meds I am on is destroying my sex drive as well.

I have no idea about if I can do anything else to help manage the condition.

[rabbit01]

Hello I have IGAN as well. Whilst there is no cure the progression of kidney damage can be delayed with steroids and medication that suppresses that part of the immune system response. Unfortunately I wasn't diagnosed till egfr was 17% so it was too late for me but certainly there are things the doctors can do if you are at an earlier stage.

[Zazzel]

Hi Zide, I have IGAN as well. How do you know you have IGAN? did you do a biopsy? Do they have any idea of the cause?

As Rabbit said there are options to slow down progression at any stage, but in particular in early stages. Diet and lifestyle changes are the first and foremost. If you search the posts for IGA nephropathy, many of us have given lots of suggestions that have worked for us. Steroids can be used if other methods don't work. My cousin took them 30 years ago and has been in remission since, but they can be harsh and cause other medical problems. If you have protein leaks, ask your doctor about Lisinopril which helps lower blood pressure, but can also decrease protein. Low doses seem to work on several of us on this site.

IGAN is an autoimmune disease and causes inflammation which affects the filtering of the kidneys. Anything you can do to keep inflammation in your body is important.

Just a few are limiting or eliminating red meat and meat in general ( some people swear going vegetarian has helped them), increasing your Omega 3 to Omega 6 ratio by using fish oil or another type of Omega 3. I use Flax oil. Omega 6 causes inflammation in the body, drink water , eliminate cola and sodas, exercise, reduce sodium, reduce sugars, reduce stress. Some studies show eliminating gluten and dairy can help in some cases of IGAN. It has helped me.

Do your own research. Most doctors won't give you a lot of nutrition advice until you reach stage 4 so be your own advocate.

As for the pain in the kidneys and the swelling. I also get those symptoms as well as itching and although the doctors will tell you that they don't start until late stage, I am in stage 2 and still have them. My ankles swell somewhat most days and then go back down over night. They are larger when I'm not at good at watching sodium or if I'm on my feet all day. I also get itchier if I don't drink enough water or have foods that are a little more inflammatory. the pain in my kidney for awhile was caused by a cyst on my kidney. The doctor said it was nothing to worry about, but it was causing some minor pain for awhile. It must have shrunk on it's own because I haven't felt it in awhile.