Up again 🤔

[poodlegal]

Hi all just recently got s nephritis flare into near remission

Kidneys perfect 6 weeks ago however 2 week ago gfr had dropped to 80 and today at hospital 3 plus of protein and 2 plus of blood what the heck is going on

The only thing different is I started hydroxy and reduced steroid from 10 mg to 7-5 mg

Feel so bloody upset why is this illness so unpredictable?

I was so happy last month now in utter disbelief now

Another thing I've not been seen regularly since Feb

Then always put into to nurses clinics it makes me angry that when u are ill they get u in every week then slight improvement they leave u then this happens and then they. Ack into caring

So frustrating anyone else feel my pain

The dr said it could just be a blip but I been at home all day testing each time I pee and yep blood and protein present every test

Anyone have any words of wisdom ??

Would be much appreciated xx

[Paul_Howard Partner LUPUS UK]

Hi poodlegal ,

I'm sorry to hear that you have had another flare up of nephritis. How long had you been on 10mg of pred? Is it possible that the reduction to 7.5mg was too sudden and maybe it needs to be a bit slower?

[1sam]

Sorry dear, I totally understand you. My kidneys are affected by lupus and they seem to have their own mind... I like salty food, soy sauce, chinese food, gravy and red meats, sadly they don't. Argh.

I'm not sure if you already have the diagnosis of "Lupus Nephritis" or your problems are just temporary. I'll leave a link here , I find the information easy to read... look into Cellcept, it helped my kidneys a lot, I'm almost in remmission after having lots of proteins, leukos and erythrocytes in urine.

Maybe you can discuss with your Dr if this is good for you. You don't have to suffer, and you deserve health stability. Big hug!!

hopkinslupus.org/lupus-trea...

[poodlegal]

Hi guys yes had stage 4 six years ago went into remission with steroids and mmf switched to aza

Had 2 miscarriages last year which brought on lupus nephritis flare

Back on mmf and steroids was all going well until recent pee sample

Yes Paul perhaps and also me forgetting my dinner time mmf wouldn't help

Now I set my alarm to remind me you can't be so lapse with this illness because uv had it a long time

Gping back to hospital a week Thursday for further discussions and test results

Many thanks to both for replying xx