vasculitis

[glendalafitte]

I have had it since 2016....on retuxin.....vasculitis killed my kidneys...on dialysis now....a lot of mussle pain and nerve damage...got it in all three sizes of the vassels...extrembly painfull....

[cpierce1016]

Hi Glendalafitte,

I was diagnosed with Vasculitis GPA in March 2017. It destroyed both of my kidneys. I have about 10% kidney function left. I was 50 when I was diagnosed. Up until that day, I was 100% healthy and did not have to take any medicine for anything. Just my 1 per day women's vitamin. I was on hemodialysis from March 2017 to September 2017 for 3 days per week and 4 hours per session. A living nightmare, especially when I had to go back to work full-time in May 2017. Since September 2017, I do in home dialysis CCPD every night while I sleep and I love it! I use 1 5,000 ml bag of solution per night and I have 3 exchanges per night. An exchange is drain, fill, and dwell. It keeps my creatinine around 3.25 and my BUM around 60. I have restless legs really bad and a lot of joint pain. Once I am up and walking I am fine but the initial getting up after sitting and first trying to walk is dreadful. I am curious to know more about you and how you are doing this far.

I am currently on the waiting list and I have a pretty promising living donor in the testing period. I am praying the same to be true for you. Get well hugs and prayers

Cathy Pierce in Caledonia, MI (USA)

[lonelyone in reply to cpierce1016]

Hi newly dxd w Vasculitis, can you tell me more? Like your symptoms everything possible about this? And cvi... Amongst other AI.

Thank you. Ali