Weg wiki page?

[Wegetarian]

Wegener's granulomatosis - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Wegener's_granulomatosis)

I think the page is very gloomy, and I think all the other places I've read had a much more positive regard given for instance treatments managing with the disease. I think this affects almost everyone who is diagnosed given how popular wikipedia is. I also suspect my friends who I've talked to went to that page directly.

I was wondering if there were some more users more knowledgeable about the disease who would like to take a look at it and maybe update the page a bit. From my understanding from reading other topics it should be quite possible to contain it early on and that there are many efficient meds so those worst case scenarios aren't that common. Just figured more information about this could put new patients at ease, perhaps there could even be a link to this support forum.

Technically I could do it myself, but I don't know much about Weg yet and English isn't my native language. (Frankly though I was hoping someone else would do it because I'd have no clue what to write about as I don't know much yet, and I'm quite lazy by nature :wink:)

[drz]

This line covers the most recent and significant development in treatment of Wegs:

On 19 April 2011, the FDA announced its approval of rituximab (http://en.wikipedia.org/wiki/Rituximab) in combination with glucocorticoids (http://en.wikipedia.org/wiki/Glucocorticoid) to treat this condition.[12] (http://en.wikipedia.org/wiki/Wegener%27s_granulomatosis#cite_note-FDA20110419-12)

I would say the article is pretty accurate and and up to date. It could expand or clarify that the death rate from toxicity of treatment means as many or more of us die from infections caused by broken immune system as from the disease itself, especially after initial diagnosis. Some of latest research from last Vasculitis Conference could be added but I don't think the article is inteneded to be a comprehensive summary of Wegs and related issues so it serves it purpose well as good introduction to what GPA is and problems it can create.

[mishb]

It has certainly been updated a lot since my initial (grim) reading of it.

I think it is pretty close now - it even has the new name.

I see the last modification was done yesterday, or is it today (depending on what Country you are in) :biggrin1:

[NikkiNicole]

The wikipedia page was the first thing I read when the doc emailed me and mentioned Wegener's. I was sitting in the PET scan trailer, after having just been injected with the radioactive goo. I read her email about the ANCA test and that she was going to be looking into Wegener's and I decided to figure out what I was up against and read that page. It was back in January of this year and basically the page said people died within two years of diagnosis. I remember wishing I wasn't sitting in that little room alone and the next people I would see were perfect strangers.
It wasn't a good feeling.
I'm glad it's been updated a little bit.

[Wegetarian]

hmm, I guess you guys are right and its not that bad... Maybe I was just a bit shocked when I read about it the first time... I mean I went from the doctors office thinking yay I don't need a nose operation (someone had mentioned that I might need an operation to open up the nose) and was going to check out what this Weg thing is that they suspected... doh!

Yeah, it felt a bit gloomy back then but then again its not such fun stuff anyway.


This line covers the most recent and significant development in treatment of Wegs:

On 19 April 2011, the FDA announced its approval of rituximab (http://en.wikipedia.org/wiki/Rituximab) in combination with glucocorticoids (http://en.wikipedia.org/wiki/Glucocorticoid) to treat this condition.[12] (http://en.wikipedia.org/wiki/Wegener%27s_granulomatosis#cite_note-FDA20110419-12)



I'm kind of curious why I often see people talking about rtx like it would be the holy grail or something, from what I browsed from some scientific papers it seemed it wasn't proven to be less toxic than cyclos and maybe barely more effective? I guess the side effects are quite different but in comparison not that much safer than cyclos. Granted I didn't read up on those two drugs since there are no plans for me to take either.



I think it is pretty close now - it even has the new name.


Do you guys prefer GPA or Weg? I think GPA sounds so technical... Weg sounds a lot more mysterious, and maybe a bit sinister :D

[pberggren1]

You're gonna be around for a long time Nikki. You got a good doc and we got your back.

[Alysia]

curious why I often see people talking about rtx like it would be the holy grail or something
... Weg sounds a lot more mysterious, and maybe a bit sinister :D

Hi,
of course weg is more cute, otherwise we are not weggies :biggrin1:
this illness is very sinister :sneaky:

my wg-doc said that in research there is not yet clear evidence that rtx is more efficient then ctx. but he also told me about a case of WG with granuloma in the eyes that responded only to rtx.
I think this is the case (if I may be proud at my doc...)
Refractory Wegener's granulomatosis: effect ... [Isr Med Assoc J. 2009] - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/19960854)

In my case RTX did great change for good. (I wrote a list about it in a thread 3 months ago).

[drz]

Having two drugs that might help contain Wegs doubles our chances of getting it under control so it is big deal that way even if it turns out not to be more effective. I think for most of us the RTX side effects also tend to be less severe or risky but that doesn't mean they are insignificant. I know I had problems with CTX to the degree that my doctors don't want to use it again on me if it is possible to avoid it so RTX is my back up plan for a severe flare if it happens.

[drz]

I like the conclusion of this study about effectiveness of RTX: Long-term observation of patients with... [Rheumatology (Oxford). 2006] - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/16632482)

Rituximab is an effective and well-tolerated treatment for patients with ANCA-associated vasculitis and should be strongly considered in severely affected patients who do not respond to standard therapy or in those in whom cytotoxic therapy bears a high risk of morbidity.

[annekat]

I am glad I was treated with cyclophosphamide (cytoxan, CTX). It was simple and to the point, just taking pills every day, and it did a good job of clearing up my symptoms. It was not expensive, with my drug coverage. I am aware of the risks. I made sure to drink lots of water. I got used to the side effects before too long. I did not have to wait long before I could feel it working. I'm now on MTX and would like to stay that way. I hope not to have a severe enough flare in the future to have to be a candidate for RTX, but I'm aware that it could happen. I don't know that they would want to give me more CTX after the amount I have already taken, as I understand there is sort of a "quota", where they may think you have already had enough of it in your life and should not have more, because of the cumulative risks over time.

[Wegetarian]

I like the conclusion of this study about effectiveness of RTX: Long-term observation of patients with... [Rheumatology (Oxford). 2006] - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/16632482)

Rituximab is an effective and well-tolerated treatment for patients with ANCA-associated vasculitis and should be strongly considered in severely affected patients who do not respond to standard therapy or in those in whom cytotoxic therapy bears a high risk of morbidity.

Thanks for sharing drz! Finally got around to reading the study and found it very interesting. It mentioned that 77% of patients got into remission by 3 months and 93% by 6 months using CTX & Pred and stated elsewhere that after 6 months of using RTX 9 out of their 10 patients didn't need any Pred. Would you or anyone else happen to know if the numbers are similar for someone using just MTX and Pred? My assumption is that its not quite as effective, but not sure about any direct comparisons.

[drz]

Thanks for sharing drz! Finally got around to reading the study and found it very interesting. It mentioned that 77% of patients got into remission by 3 months and 93% by 6 months using CTX & Pred and stated elsewhere that after 6 months of using RTX 9 out of their 10 patients didn't need any Pred. Would you or anyone else happen to know if the numbers are similar for someone using just MTX and Pred? My assumption is that its not quite as effective, but not sure about any direct comparisons.

The numbers sure are better now than a few decades ago when mortality ran 90% in a few weeks. i wonder if there are enough studies on MTX effectiveness since it is used less frequently and generally in less severe cases. But it might be like some cancers where the most severe cases have the best response to treatment and the less severe cases the poorest response, maybe because they tend to be treated less aggressively too.