Vasculitis – GPA

[cpierce1016]

On March 18, 2017, at 50 years of age, I was diagnosed with vasculitis – GPA. I am a white female. I was hospitalized until April 15, 2017. During my stay I had numerous blood tests, CAT scans, Ultrasounds, Endoscopy, Port put in my neck and then chest for dialysis, blood clots, 2 intestinal blockages, etc. My body was a toxic mess! I had 8 Plasmapheresis, numerous dialysis, and since October 2017 I now do daily in home dialysis using my peritoneal membrane. My kidneys produce urine and that’s about all they do. It appears my nephrons were damaged by the ANCA that attacked the major blood vessels in both of my kidneys. My research shows that a large part of the kidney can repair itself, but nephrons never will. I am coming up on 10 months and I am still holding onto hope that my kidneys will come back eventually. I was told I had a very aggressive form of vasculitis. I am looking for other patients that have this exact same disease to share information and hope with. I have a brother that will donate a kidney to me, but I want to use that as a last resort option. I do not like the cons of a transplant. Rejection medicine for the rest of my life for 1 example. My last creatinine check was 2.77 and my BUN is 71. So, I am still in stage 4 kidney failure.Thank you in advance for any positive or hopeful feedback.

[Cvansidener]

My thoughts and prayers are with you...I have a different type of Vasculitis but wanted to share a kind word to let you know how supportive this forum is to all of us suffering from rare diseases. There are a lot of well informed people here and I hope someone with knowledge helps you quickly! Love and prayers foe recovery and guidance. Mahalo, CV

[cpierce1016 in reply to Cvansidener]

Thank you and sending healing prayers to you also

[Hidden]

Hi,

What treatment have you been given for the Vasculitis ( immunosuppressants) as that's the only thing that will restore kidney function.

[cpierce1016 in reply to Hidden]

I was given Rituxan to kill the ANCA's that were attacking my kidneys. I also had 8 Plasmapheresis to kill off the bad antibodies that were attacking my kidneys

[Hidden in reply to cpierce1016]

Ok, just one dose of Rituximab or a course? Were you given prednisolone as well?

[ZiggyDiego]

I'm 54 and I was diagnosed with GPA in January 2017. The main issues for me have been with my eyes, joints, sinuses and now lungs, but they're keeping a close eye on my kidneys. I'm resigned to taking medication for the foreseeable future. I've had cyclophosphamide, azathioprine, mycophenolate and most recently Rituximab to try and get the disease under control. My eyes are much better now which is a relief. It's so hard to make sense of what this disease is all about: every new development has me re-reading and seeking information. I wish you well and hope there are better times ahead.

[cpierce1016]

Thank you for the information and I will keep you close in prayer. So far my GPA only attacked my kidneys, but it ruined them which is why I am on dialysis.

[arcr]

I am so sorry and send you hugs. I have a different kind of vasculitis but wanted to share my support. We are hear to listen. Stay strong!