Can you help me....research help needed urgently..

[Karen]

Here is the NiH's page on it - that the American National Institute of Health -

http://kidney.niddk.nih.gov/kudiseas...s/goodpasture/ - it has some other links at the bottom of the page that might be helpful.

[carole]

Thanks candace and karen will go check it all out.

[Husky_mom]

I was going to post the same as Karen did.. hope that helps..

here´s a bunch other links
http://www.google.com/#hl=en&cp=22&g...w=1280&bih=709

[carole]

Thanks everyone, i have been to these sites before, so if you can find anything new or maybe a contact for a specialist in the US or Uk, That would be great, thank you for taking the time to read and post,means an awful lot to me.

I have just heard he will be given the new drug RITUXIMAB,as an infusion on wednesday, while still under going the plasma treatment, it is a pretty scarey drug, can have some serious side effects.

[Freedom]

All I could find was the links at the bottom, as Karen had posted.

Did you send emails to the 2 helplines listed there?

I am so sorry your family is going through this.

[mrspunkysmom]

Thanks everyone, i have been to these sites before, so if you can find anything new or maybe a contact for a specialist in the US or Uk, That would be great, thank you for taking the time to read and post,means an awful lot to me.

I have just heard he will be given the new drug RITUXIMAB,as an infusion on wednesday, while still under going the plasma treatment, it is a pretty scarey drug, can have some serious side effects.

In case you haven't seen this: The mayo clinic is conducting a trial for RITUXIMAB at this point. Here's the LINK.

I also found this link to an Edinburgh research group.

[carole]

Thanks everyone, unfortunately i have found these websites before, i think i will consider flicking off an email, not sure where to start with it all, but anything is worth a try,i am confused though as his specialist told him his remission would be for 20 yrs,and yet on facebook, many have had it come back, he is rare case here though, which makes it all that much more serious, as they are not really experts in dealing with it, that is why i am thinking of the US or UK, because there are so many more people over there who have had it.

Still very worried about this new drug infusion next week,the side effects are pretty awful.

[wombat2u2004]

It sounds very similar to Lupus, which my first wife had, and nearly died from.
They hit her with a drug called Endoxan, it knocked the bum right off her, but it worked.