Lol76help

[lol76]

hi am lol was diagnosed with lupus 16 months ago I have nephritis stage three and am really scared help haha I have a brill nephrology team they are great but don't know what will happen in the future 😊 xxx

[Neriah]

Hi Lol,

I can't say what will happen with you, we are all so individual with this disease, but I can tell you what has happened with me so far. I was diagnosed with lupus nephritis three in 2014, having had lupus itself, relatively conservatively treated for some twenty years. I was hospitalised for about a week and released with a cocktail of drugs which I can give you full details of if you wish, though as I say, we are all different. These were reduced over time. As of now, I am on 4mgs prednisolone, 50mgs losartan and 50 of hydroxychloroquine. I am also in the middle of a course of four rituximab infusions, which are probably being the most helpful intervention so far - in that I have increased levels of energy.

How am I ? the answer is - not bad. I have some proteinuria still and my BP can be elevated - hence the losartan - but I am functional. I do Tai Chi and swimming, rest a lot and meditate. I don't do anything special with my diet, though maybe I should as I have put on a lot of weight. I can't walk all that far - say a mile or so. Apart from that I have the usual lupus fatigue and aching. I make fairly extensive use of homeopathy and herbalism and sometimes aromatherapy. I find it important not to push myself too hard; if I do I can become both distressed and depressed.

That in a nutshell is my experience. Good luck with yours!

[Buffy14]

Well it is really good you have a good Renal team , have they not explained everything to you ? I was diagnosed with lupus almost 15 years ago now and I have had lupus nephritis level 3 from diagnosis, at the time they said I may eventually need dialysis but wouldn't be for 15 to 20 years , as I said I am at 15 years since diagnosis now and am not at the dialysis stage nowhere near my gfr is 47 and has been stable at that for years although i am on steroids and Mycophenolate which is an immunosuppressant drug , my rheumatologist recently told me that if my gfr remains stable I won't need dialysis but did say having a severe flare could change that . What medication are you on at the moment?

[Paul_Howard Partner LUPUS UK]

Hi lol76 ,

I'm glad to hear that you have a really brilliant nephrology team. Have you been started on treatment for your lupus nephritis?

You can learn more about lupus and the kidneys in our booklet at lupusuk.org.uk/wp-content/u...