Phil do you realy believe that

[delorisdoe]

Ivig treatments are not effective in aiding in the treatment of wegners. My personal experience was that I acheived a drug free remission within 2 months of receiving these treatments that lasted 8 years. I guess I like to think it was the ivig as the only other answer would be that 2.5 steady years of cytoxan. Mind you it is the fact that the cytoxan almost killed me that I was given ivig at all. I was lurking on the facebook page reading the conversation between you and Bruce. You seem so sure that ivig does nothing.

[Sangye]

Just poking in.... I don't think anyone can say IVIG does nothing at all for every person who takes it. Dr Seo did tell me studies showed it wasn't effective for Wegs as they had hoped. But remember, in all studies like that there are some people who do improve with it, just not enough to count as statistically significant. So maybe you were one of the few people it helps, Leigh. It does have anti-inflammatory properties, which is why they use it.

I understand why researchers are not interested in anecdotal evidence, but in your case I think it's hard to dispute that it helped.

[delorisdoe]

I dont deny that it is the long term cytoxan that put me in remission. I am quite sure that without it the ivig would have done nothing. I also understand why 1 persons possible positive outcome with it would be of no interest to anyone. I really do lean more towards believing that the cytoxan is the only explanation. Ivig did make me feel good though lol

[Sangye]

Anecdotal evidence can be used as a springboard into doing further study, but it can never replace the scientific gold standard--randomized, double-blind, controlled studies. In your case the ctx may have been an important factor. In a research study, they would place restrictions on participants to eliminate variables like that so that they could get true data on the drug in question.

[NicShaf]

I feel silly asking, but what is IVIG?

[Sangye]

It's an immunoglobulin infusion treatment that is used to treat several autoimmune diseases with great success. It's used with Weggies if certain immunoglobulins (antibodies) drop too low.

[NicShaf]

Ah, I see. Thanks for clarifying

[Daggar]

Intravenous immunoglobulin



Not sure about IVIG but plasma exchange was critical, along with the other treatments, in saving as much kidney function as possible in Holly's case. It was only used during the initial ER stay.

[me2]

I did IVIG a few years ago and did not feel it did me any good. That is why I have had to continue on with every other treatment under the sun.

[Sangye]

Daggar, plasma exchange (plasmapheresis) is a very different treatment and is an established treatment for Wegs. Up until now they've used it pretty exclusively to treat severe kidney involvement, but there is a study underway looking at its usefulness in controlling severe lung involvement-- alveolar hemorrhage in particular.

I have had repeated alveolar hemorrhage--one of the most difficult manifestations of Wegs to treat. Ironically, ever since I heard of plasmapheresis I had a strong gut feeling it would help me. I've never had it and am not a candidate for the study. I've noticed that the members on here who've had it seem to go into lasting remissions. I asked Dr Seo about it once and he said that is often the case, but that kidney involvement without lung involvement is also "very easy" to get into remission. I hope the new study shows it's effective for those with lung hemorrhage, too.