In remission and 2 months without cellcept and on 5mg pronisone.Any experience.

[tamidi]

My daughter has pulmo renal syndrome panca and gbm positive .

She has been diagnosen 12.2011.She is 2 years in induced remission.

Her Dr.decided to stop MMF in 1.2014 afer 18 months.This days she is taking 5mg calcort(pronisone).

Any experience about remission and getting off all medicament.

[AndrewT]

Dear tamidi,

Not really too sure, on this one, except to say be VERY carful 'coming off' anything- that your daughters body has got used to. I'm on MFM (is this the same/similar?) since a kidney transplant, last July. I also don't know a lot about 'pulmo renal syndrome', to be honest (I'm no bl..dy good at all, am I?) but I was on dialysis, for four years, along with some ten pre-dialysis- so I do know a bit about renal failure! Do you know her creatatanine (I think that's spelt?) level? A good indicator, of 'overall' kidney function.

I'm quite sure that everyone, on 'Health unlocked', sends you daughter their best wishes. Have you joined our 'forum'? You can we don't bite- well not hard anyway! Seriously though most of us- if not all of us- find the information exchange both useful and informative. It's good to know that others do actually understand what is, and has, 'happened' to you- in a way that the 'professionals', no matter how 'good' they are, just can't quite grasp.

All that remains is to, once again, send my 'best wishes', to your daughter, and hope to hear from you soon.

AndrewT

[tamidi in reply to AndrewT]

Hi AndrewT

You are right it is MMF.

Pulmo renal syndrome is something whan dr.can tell you are you having microscopic polyangiitis or godpasture.

My dqughter is 12 years old.Her lungs and renal function are normal.Creatinin is in normal range.HGB was to years 4 and now is 15.

I write thise question because I just tried to find if there is people without drugs in good condision.

Good story with happy end .That is my question.