Has anyone got good pastures ?

[jolittle93]

Hi ive been diagonised with vasculitis with positive anti gbm last july. I have veen on pred starting on 60mg and now down to 5mg, had 10 plasma exchanges and then 9 rounds of chemo. My kidney function dropped to 9% and has regained to 40% but the last three wks it hasnt moved. Im just wondering if anyone has gone through this and can tell me if there kidney function stopped and then went up more or if i should just accept this is where my function will stay? Im 31 female.

Thank you

[lismacb]

Hi. I was diagnosed with MPA September last year. Unfortunately kidneys had been severely affected by the time I actually got the diagnosis and was admitted to hospital with 6% Kidney function. 5 rounds of dialysis and 7 plasma exchange plus 6 rounds of Cyclo and I’ve just reduced Pred to 10mg. My kidney function has hovered between 15-20 since September and never moved above. It seemed to stick at 18% for about 5 weeks then dropped to 16 and back to 17. My consultant (who has been fantastic) has said that I could see some further improvement but initial kidney biopsy did show damage which would probably only maintain this level.

I guess everyone is different and well done for getting back to 40%. Keep positive, I know it feels a struggle most days but sounds like you’re heading in the right direction.

[jolittle93 in reply to lismacb]

Thank you for your reply. My biopsy was so bad they didnt think i would improve and be a transplant case but stayed positive and they have. Just wish they woyld go a little bit more.

I hope you have a soeedy recovery and they do go up for you.

[Hidden]

Hi,

Unfortunately Goodpastures is a very rare Vasculitis variant so I am not sure that anyone with it will reply to your post.

In general renal function will normally improve at first and then plateau. Have you asked your Consultant whether they think it will improve any further?

I am sure you have been told that it’s important to monitor your symptoms and get in touch with your team straight away if you feel that the Vasculitis is flaring or not as well controlled as it could be.

[jolittle93 in reply to Hidden]

One of my consultants didnt think id get past 25% so i guess i should he over the moon. Ebery time i ask my main consultant something she is like its just a wait and see game. Just wish they knew more but with it being so rare i guess they cant say

[GarethG]

Hi there, I was diagnosed with anti-GBM disease and was ANCA positive when I was 16 years old (about 6 years ago). I had the pulmonary only variant of the disease so I can't say much about kidney function unfortunately!

[jolittle93 in reply to GarethG]

Can i ask how have u found life after treatment etc? Have u hsd any relaspes

[Mywife]

hi my wife has good pastures,. her kidney function never came back and its been 6 months and we are working on getting her on a transplant list