Anyone with kidney involvement and APS and CNS involvement???

[Reinke]

I feel like I don't meet many lupus people who have nephritis and antiphospholipid syndrome. I have had lupus for 20 years, aps for 17 years and just recently it hit my brain. Just looking for people to commiserate with!!

[Hidden]

Hi Reinke

You might want to post this in the Hughes Syndrome/APS forum as I know there are people with APS and kidney involvement on there too:

healthunlocked.com/hughes-s...

[roobarb]

Hello Reinke

Have a look at my profile, we have some things in common & would be happy to chat with you. You can probably give me lots of tips & info as I am new to the APS/kidney side of lupus. I find hearing about other peoples experiences really helpful & often very inspiring too.

Best wishes, Roobarb. X

[jani4063]

Hi Reinke,

I have aps, lupus nephritis grade 4 and cns lupus, I have just turned 50, I have recently had 9 months of cyclophosimide (chemo)which finished in October this year after they discovered lesions on my brain after an MRI scan, however, my symptoms are starting to creep back, I'm actually back in hospital tomorrow for a course of rituximab.....had this treatment before without much success but hoping it might help this time. I have only just gone back to work in October after my chemo treatment ended but I am finding work really difficult, I work as a radiographer in the NHS and the job is pretty full on so not sure how long I will be able to stay working. I cope by just trying to take each day at a time. If you want a chat please do hope you are feeling a bit better

Jani

x

[Bonnie39]

Hi. I have finally been diagnosed with lupus and aps eight years on from a stroke. I have UTIs monthly and many TIAs each year. And still my GP likes to play down how ill I am. It's exhausting being ill without having to convince your GP how you feel. I'm hoping that the specialist at St Thomas ' will investigate potential kidnwy problems.