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

[carole]

I have been surfing the net in search of something which is very important, and i just keep coming up with nothing.

let me explain, some of you will know my nieces husband has been very ill with a very rare illness, there are only like three people including him in my country who have this, good pastures syndrome, he underwent plasma exchange treatment, chemotherapy and is on about 8 medications per day, he was told he was in remission, and the remission is like for about twenty years,however sadly it has returned in just two years, and now he is under going more plasma treatment, and so far responding well better than last time, this illness effects the lungs and kidneys, in his case his kidneys, because this has never happened before, well here in NZ, they really are not sure what to do, all a bit of guess work, he is to have a new treatment called fusion, after the exchange, at around eight thousand dollars a time,luckily it is funded,the only blessing in this tragic story.

What i am asking of you all do you know of or have heard of anyone in the US or UK or anywhere worldwide, where this has happened to them, I really want to contact a specialist in the US or UK,and find out how this has been treated, and what options there may be for him, even if it means traveling to the US or UK, and raising funds to do so, this is a matter of urgency, and this is a life threatening situation.

Meanwhile this brave young man age 28yrs old, continues to run his panel beating business (fixes your crashed in to cars etc,) i know you have a different name over there for it,an example, he had five hours hooked up to the machine, like dialysis but in his neck,then went back straight away to work in his panel shop for another five hours, this treatment is hard on him and makes him very tired, but he just keeps at it,also my niece is working part time, trying to hold on to it all, keeping up her spirits and my sister looks after their two precious boys aged 1 and 4 whenever she needs to.

It has been heartbreaking to see what they have had to endure, both emotionally, financially,just recently he lost his apprentice, who was tragically killed in a car crash at only 18, he took it very hard, and they have had some very stressful times,and more ahead.

I know how great everyone here is at finding out things, so that is why i came here to ask for your help, anything would be appreciated, i myself will continue to look as well, thanking you in advance and thanks for listening,

[Catty1]

pm'd you

[Karen]

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

http://kidney.niddk.nih.gov/kudiseases/pubs/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&gs_id=5&xhr=t&q=good+pastures+syndrome&qe=Z29vZCBwYXN0dXJlcyBzeW5kcm9tZQ&qesig=3kNbPvR1OJkewzDDRBQxsQ&pkc=AFgZ2tnKhAKmKA0KJp6dUhVlHkiCwowtAgop8UCQ11tCv0 weL3c_0fihIHo5IKjscq8AbZH48FjEhT9cUtGcOlx-JxGjAFTTZw&pf=p&sclient=psy&site=&source=hp&pbx=1&oq=good+pastures+syndrome&aq=0&aqi=g1g-sv4&aql=&gs_sm=&gs_upl=&bav=on.2,or.r_gc.r_pw.&fp=3665754608edbaf3&biw=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 (http://clinicaltrials.mayo.edu/clinicaltrialdetails.cfm?trial_id=100753).

I also found this link to an Edinburgh research group (http://www.edren.org/pages/edreninfo/goodpastures-anti-gbm-disease/goodpastures-disease-more-info.php).

[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-disease-information/rare-diseases/byID/279/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. :mad:

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.