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

[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.

[Catty1]

From what I have read, Carole, it is a disease of the immune system. The body's immune system attacks healthy tissue, including the kidneys in this case.

Immunosuppresive drugs are often used, as they are for MS, rheumatoid arthritis and other immune disorders.

Some people with pasture's have had to have a kidney transplant. Since a transplant patient has to take immunosuppressant medication for the rest of their lives, that probably also keeps the symptoms at bay.

From Wikipedia:

Autoimmune diseases

Rituximab has been shown to be an effective rheumatoid arthritis treatment in three randomised controlled trials and is now licensed for use in refractory rheumatoid disease.[7] In the United States, it has been FDA-approved for use in combination with methotrexate (MTX) for reducing signs and symptoms in adult patients with moderately- to severely-active rheumatoid arthritis (RA) who have had an inadequate response to one or more anti-TNF-alpha therapies.

There is some evidence for efficacy, but not necessarily safety, in a range of other autoimmune diseases, and rituximab is widely used off-label to treat difficult cases of multiple sclerosis,[8] systemic lupus erythematosus and autoimmune anemias.[9]...

Other autoimmune diseases that have been treated with rituximab include autoimmune hemolytic anemia, pure red cell aplasia, idiopathic thrombocytopenic purpura (ITP),[11][12] Evans syndrome,[13] vasculitis (for example Wegener's Granulomatosis), bullous skin disorders (for example pemphigus, pemphigoid), type 1 diabetes mellitus, Sjogren's syndrome, and Devic's disease,[14] and thyroid-associated ophthalmopathy.[15]

A new study from Norway suggests that rituximab (together with methotrexate) might help patients with chronic fatigue syndrome.[16] A clinical trial is ongoing.[17]

Does NZ have a retraining programme he might be eligible for in order to get away from the chemicals? The pasture's may not be related to it, but surely it is hard on him to work there.



HUGS and prayers going out.

[carole]

candace i really don't know about the re-training thing, he has his own business, and he does not do the painting, has a painter for that, however they are now looking at selling up, however that can take years,and he is not trained for anything else, sadly it was his dream, and the business was just starting to pick, up, bought it in the recession and has been holding its own, he is such a pefectionist in his work too and such a hard worker.

The treatment here is very experimental, as they have not dealt with it like his case, so that is why i was hoping to find out more in the US and Uk, bigger countries with bigger population and resources.

The last person who they treated here, has since died with it, so you can see my urgency in this matter.