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

[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.

[cassiesmom]

What about the National Organization for Rare Disorders---

http://www.rarediseases.org/rare-dis...9/viewAbstract

[carole]

Thank you everyone for taking the time to research, it is so appreciated, cassiesmom, i have not seen that page before, and i see some email addresses i can respond to, i think that is a good start for me to begin with, thank you very much, will let you all know if i get any results from them, cheers.

[mrspunkysmom]

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.

Yeah, Lupus is a nasty disease. My mom died from complications from Lupus, having survived 50 years with it, although diagnosed 45 years ago with it. Her Lupus affected her skin and joints mainly, and perhaps her cardio health.

What killed her was the Lupus clotting syndrome which was clotting her blood vessels causing strokes. It was discovered too late because the docs attributed the clots to cholesterol (<140). Another doc had taken her off of Lupus meds which caused it to come out of remission. And rather than treat the cause they treated the symptoms with blood thinners.

Carole, I wish your niece and her husband the best of luck with this and all the help the heavens can give them.

[carole]

Thank you for your positive and lovely messages, yes it is very hard on them all, Lupus is also a dreadful illness as well, however i do think good pastures is quite different in other aspects, the downside of good pastures is it is a rare illness, that they don't even really know the cause of it.,he has worked with paint, spray painting cars, and there is a connection between that, but nothing can be proved or one cannot know for sure, because of that there is no compensation for him what so ever, which honestly is so unfair,poor guy just has to keep working to provide for his family, no matter how ill he is, and he is very ill.