Morning, just curious who else is suffering with this as the cause of you kidney disease?
I find it a bit of a nuisance sometimes that there isn’t a great deal I can do to make things better, as it’s an enzyme sticking in my kidneys that my immune disease thinks is bad, so attacks it and kills my kidney.
I have read of new medications coming through that help prevent it, which would be good for post transplant, but as I am 2-3 years away from even being considered that now after my recent cancer diagnosis, it just makes me feel like some days it’s hard to keep at it
I hear you, I am also with IgA Nephropathy. It’s so crazy to get your head around how a little thing such as IgA getting trapped in your kidneys can cause so much havoc.
Sorry to hear about your recent cancer diagnosis on top of everything you are already dealing with, it must be incredibly overwhelming at times.
The new research in the drugs such as Povetacicept and similar BAFF/April’s definitely look promising. Are these the medications that you’ve read about?
I take 8 different meds each morning for various BP, heart rate things to try and make things easier. Not sure if that’ll change once on dialysis which I am expecting to start in 2-3 months now
I was diagnosed with IgA in October 2019, and have now been on dialysis since April 2023. When I was first diagnosed there was not much information or medication for this disease, but research into this is being done, so hopefully new treatments can be found.
Sorry about my recent cancer diagnosis, that must be difficult to deal with on top of IgA.
Hi, I’m JD and was diagnosed with IgA nephropathy just over a year ago. To say it was surprising is putting it mildly. I found out when I went to my GP with a rash on my arms and legs. She suspected vasculitis. The next thing I knew was a referral to a nephrologist, who suspected IgA nephropathy. Lots of blood tests, urine tests and one biopsy later it was confirmed. I’m hovering between stages 1 and 2. I’m lucky in that respect, I guess
It’s been… not fun. The main problems for me are the fatigue, the brain fog and the low mood. I feel like this disease has taken away my sense of agency, my being able to do the things I need and want to do, when I want to do them. It’s really been dragging me down.
It’s only quite recently become less of a problem. My nephrologist put me on dapagliflozin back in June and that does seem to have helped. Fingers crossed it keeps working.
Hi, dapaglofloxin slowed my decline also. I do take 7 different meds though to keep things stable and reduce BP.
It sounds like you’re suffering being at that stage already, as I am stage 5 and have brain fog at times and general fatigue, and extreme fatigue other times.
I do walk 20-30 miles a week, and have done the last 3 years which I think has helped alleviate some issues, but I do feel it at times.
I appreciate that everyone’s different though and different stages affect different people, but at stage 1,2 keep positive and try and work through things and try not to overthink things and what the iGa may be doing to you
Thanks for taking the time to reply. It’s strangely reassuring to know that some else gets how it feels. Must admit it felt like I was losing my marbles! You know, the ‘am I really this exhausted or is it all in my head’.
Hi, no problem. I struggled when I went to stage 3b/4.
I’ve found the brain fog has gotten worse since going to eGFR 13 now, but I am aware there are times that I feel ill and think I am getting worse, but it isn’t iGa related and can be just a virus, but I do find now that bugs take a lot more out of me than they did
But I do think that a positive mind is important, not to just ignore what’s going on, but to keep yourself from spiralling into a dark place of feeling ill all the time
