Lupus appointment

I saw my rhumy today cut story short she said I had suffered a mini flare up I refused steriods again so have upted the hydroxy to 2 a day and increase dose of omeprazole I have protein leaking since 2012 November but never had kidney biopsy this may come to that after I have a 24 hour urine sample protein creatine ratio test and results are not good anyway most of all scared that I had kini flare up will the hair fall out again at all im scared am 20 tell the truth no lies am sick of people just justifying truth thanks alot

4 Replies

  • Metoyou...I am so sorry. Just curious about what is said about the protein leak? This is how I found out my kidneys were scarred. I had protein in my urine. I did my own research and when I got a sono for my possible gallstones, they took a sono of kidneys. HaS your rheumy told you why you have protein leaking, and what does a biopsy show?

    Thanks.,..hope things get better

  • Try not to panic. Let's see what the urine sample says first. As for the hair falling, not two flares are the same, so take heart - hair might not be affected this time. You refused steroids but remember that inflammation is not good for the body in the long term. Hydroxy is good but it doesn't control sudden attacks. Have you considered immunosuppressants?

  • Hi,

    In regards to refusal of steroid treatment each to their own. The side effects can be horrid especially with the weight gain and moon face which I find very difficult when prescribed a high dose. It can really chang your appearance and affect self - esteem and i can imagine this being very hard to face if you are as young as you. However it seems to be the best drug to treat inflammation and flares.

    I've refused certain drugs in the past but I wouldn't rule out prednislone if things get worse.

    If I were you I'd ensure you get tests to see how your kidney function is doing and request a biopsy to keep yourself well informed.

    I had my first kidney biopsy in 1999 and again in 2005. By 2009 my kidney function rapidly deteriorated. This was after years of careful monitoring. In 2010 I was diagnosed with end stage renal failure. I commenced dialysis in 2011 till present. It was a complete shocker but I do it from home now so have more flexibility.

    Leakage could be a indication of lupus nephritis but it can be controlled. I went a good 12 years before I got to zero functioning kidneys. You can still live a full life. Which I try to do. I hope you get the answers you need.

    All the best

  • Hi all I see DR D Cruz at guys however I have had protein leaking from a long time however my rhuemy has never thought I needed a biopsy or anything I have had PCR protein creatine ratio and it has never had a high number which needed to be reported back to my rhuemy I sometimes get + or ++ I dont get any othef syptom my urine shows good kidney function and bloods do as well so rhuemy has been against a biopsy ever since please help eevaluate on this issue and what is my best option

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