Is there anything I can do to halt my disease progression?

[mkjk]

Is there anything else I can do to halt my disease progression? My current GFR is 86 and I'm just trying to stop this thing before it gets out-of-hand. I currently do not eat refined sugar, gluten, or red meat. I have been sticking to a low sodium diet as well and eat mostly vegetables and fruit. I am open to any recommendations and all help is appreciated. I will do/try anything, I'm extremely desperate.

P.S. My disease is IGA nephropathy.

[Marvin8]

Stay well hydrated, exercise, keeping eating healthy, and you'll have absolutely nothing to worry about........except for coronavirus.

[mkjk in reply to Marvin8]

Thanks so much for your advice, I am extremely grateful.

[rabbit01]

86%! Are you kidding? That is a wonderful amount of kidney function. It sounds like you are doing all the right things so just carry on doing what you are doing and you will most likely be fine and your kidneys will outlast you. How do you know for certain you have IGA nephropathy? Surely they have not done a kidney biopsy at your stage?

Anyway, just keep yourself as fit as you can be and well hydrated with good quality water. Do what you can to avoid infections as that can cause an IGA flare up which can (but not always) hammer your kidneys.

I too have IGA nephropathy. In my case it was an aggressive form and I had a huge flare up as a result of a chest infection five years ago which left me with an eGFR of 17% and I was only aged 48. I had further damage as a result of the antibiotics for the chest infection! My eGFR then declined at 2% per year till I got to 7% and started dialysis.

Not everyone who has IGAN gets problems with their kidneys, honestly depending on your age you have near perfect kidney function. Try not to stress about it as that certainly wont do you any good. All the best.

[mkjk in reply to rabbit01]

Thanks for your reply. We have just done the biopsy about 2 months ago confirming it, although doctors have suspected it for about five years. I work out about 45 min to an hour a day, about six times a week. Because of the Covid-19, I try to stay hunkered down to stay safe. The reason why I am so concerned is because I am 17 and I really just want to live an average life like everyone else. Anyway, best of luck to you as well and thanks for your reply.

[rabbit01 in reply to mkjk]

I am surprised that they put you through the risk of a biopsy at such a high kidney function but at least you know for certain what you have. It was too late to give me steroids or immune system suppression but I know plenty of people that have done really well on this treatment so hopefully you will be offered that. It sounds like your medical team are on the ball which is good. Keep doing the things you are doing. Take care.

[mkjk in reply to rabbit01]

Thanks again for your reply! My labs were not looking too good due to a presumed flare, so they wanted to figure out what was going on. They have mentioned immunosuppressive steroids, however, I am not taking it. Also, if you have not already, I recommend drinking 1-2 cups of nettle leaf tea per day. So far I have seen pretty good results in decreasing my proteinuria and I have heard it can increase GFR. Have a nice day as well.

[AndrewT]

Dear mkjk,

I think you, are Doing, just FINE as you are. Just be, Very careful, of infections- NOT just Covid19 (coronavirus).

Hand washing- YES, Not Gong Out, more than you have to- Yes. Asking friends/ neighbours, to assist you- from a distance... Yes. Face Masks, unless they are Full Face, or Surgical...Not really No (might make you Feel Safer.... Be careful with that too.)

Outside of, ALL of that, just do the best you can- rather like the rest of us.....

Stay Safe

AndrewT

[mkjk in reply to AndrewT]

Thanks Andrew, hope all is good to you as well and stay safe!