CCX168 Study Results and ANCA-Associated Vasculitis phase II results for CCX168 will

[stikker]

I feel like I'm always posting links. If you want me to stop just say so.
I joined a Wegener's group on facebook. They sent this to me today.

ChemoCentryx - News - Press Releases

[drz]

I feel like I'm always posting links. If you want me to stop just say so.
I joined a Wegener's group on facebook. They sent this to me today.

ChemoCentryx - News - Press Releases

Sounds promising. We wouldn't know about these things if you didn't share them. Thanks!

[LisaMarie]

thanks for the info....maybe i will ask Mayo about it..since nothing else works...we upped my pred today...ughh...but i am breathing better...

[Daggar]

Keep them coming!!! Although there is a wealth of information regarding WG and its history... I haven't found enough information with promising "new treatments" or more information that pin-points the causes.
It's frustrating considering that the toxic cyclo-pred mixture has been the main course of action since the 1970's. Then again.... those who were unfortunate enough to be diagnosed before the 1970's would have gladly taken these drugs for as long as needed.

[marta]

This is very interesting indeed. I'm about as far from a conspiracy theorist as they get, and I appologize if the following might sound like I am, but I just found this article 'funny' in a not so funny way - and I don't think it's a conspiracy, but just an odd coincidence. As some of you might know, I feel very strongly that my WG was triggered by the H1N1 shot I got last November - my symptoms started just over two months after getting it and then again my flare in October started two days after getting the flu shot which had the H1N1 vaccine in it.

So here's what I find funny. According to the article once the phase II Clinical trials are complete GlaxoSmithKline will have licensing rights to sell this drug. They are also the ones who own the H1N1 vaccine. Influenza A (H1N1) 2009 Monovalent Vaccine - Vaccines - GlaxoSmithKline also if you click onto the prescribing information link on that page or here: http://us.gsk.com/products/assets/us...nza_a_h1n1.pdf and go to page 7 and look just above section 7 at the bottom of the page, you'll see this statement -
Microscopic polyangitis (vasculitis) has been reported temporally associated with influenza vaccination.
Here is another link that I find interesting... CBC News - Calgary - H1N1 shot blamed for Calgary woman's rare disorder

I'm very happy to see that there is some work towards finding some new treatment options for this crazy ride we're on, and hopefully something comes out of it in our lifetime, I just found the associations kinda funny.

[drz]

This is very interesting indeed. I'm about as far from a conspiracy theorist as they get, and I appologize if the following might sound like I am, but I just found this article 'funny' in a not so funny way - and I don't think it's a conspiracy, but just an odd coincidence. As some of you might know, I feel very strongly that my WG was triggered by the H1N1 shot I got last November - my symptoms started just over two months after getting it and then again my flare in October started two days after getting the flu shot which had the H1N1 vaccine in it.

So here's what I find funny. According to the article once the phase II Clinical trials are complete GlaxoSmithKline will have licensing rights to sell this drug. They are also the ones who own the H1N1 vaccine. Influenza A (H1N1) 2009 Monovalent Vaccine - Vaccines - GlaxoSmithKline also if you click onto the prescribing information link on that page or here: http://us.gsk.com/products/assets/us...nza_a_h1n1.pdf and go to page 7 and look just above section 7 at the bottom of the page, you'll see this statement -
Microscopic polyangitis (vasculitis) has been reported temporally associated with influenza vaccination.
Here is another link that I find interesting... CBC News - Calgary - H1N1 shot blamed for Calgary woman's rare disorder

I'm very happy to see that there is some work towards finding some new treatment options for this crazy ride we're on, and hopefully something comes out of it in our lifetime, I just found the associations kinda funny.

These articles certainly support the idea the flu shot can trigger some types of vasculitis so it not unreasonable to assume you might have been one of those lucky one in million cases or whatever the numbers actually prove out to be. But like the article about the woman, we are playing the odds when we know we have diabetes or other health issues that make it prudent to take the chance of getting the flu shot. But like the woman said now that she knows how it affected her she would never get another one.

What will you do next year when they encourage you to take a flu shot?

[Sangye]

stikker, I love the articles. I don't have time to keep up with the research articles and appreciate you posting them.

Marta, wow. To see that MPA can be caused by the flu shot...there you have it. I also thought it was very telling (and sadly typical) that the woman's doctor didn't want to be identified. I'm sure he didn't want to be criticized by his peers for telling the truth about the shot.

drz, you might be interested to know that holistic physicians advise the opposite to patients who are already sick. Who is more likely to have a negative reaction to a vaccine--someone who is strong and healthy, or someone who's immune system is compromised and also can't tell self from other?

[Daggar]

I'm just confused as to what they mean by causing any form of vasculitisis "temporally" ... I don't see anything temporary about it? Are they trying to say that the inflammation is only temporary to avoid the long-term damages?

Holly's experience was a lot like Marta's which scares the crap out of me. Holly was given the H1N1 shot two months before she developed that cold I had previously mentioned whereby her sinuses wouldn't clear up and needed antibiotics to do the job. She developed the joint pain 3-4 months after that which was the beginning of her journey.

I'd be curious to see if there is a connection -- not saying anything is certain -- so that it can be avoided in the future.

I hate that response of "she was the unlucky one in a million"!!! That is acceptable in the "natural" development of illnesses but when it comes to immunization that is being pushed down your throat... 0 is a more acceptable number.

[drz]

I'm just confused as to what they mean by causing any form of vasculitisis "temporally" ... I don't see anything temporary about it? Are they trying to say that the inflammation is only temporary to avoid the long-term damages?

Holly's experience was a lot like Marta's which scares the crap out of me. Holly was given the H1N1 shot two months before she developed that cold I had previously mentioned whereby her sinuses wouldn't clear up and needed antibiotics to do the job. She developed the joint pain 3-4 months after that which was the beginning of her journey.

I'd be curious to see if there is a connection -- not saying anything is certain -- so that it can be avoided in the future.

I hate that response of "she was the unlucky one in a million"!!! That is acceptable in the "natural" development of illnesses but when it comes to immunization that is being pushed down your throat... 0 is a more acceptable number.

If they require a zero incidence rate for any complication or bad side effect there would be no treatments or shots of any kind. I am puzzled though by Sangeye's comments that a holistic doctor would not encourage us (elderly and/or diabetics) to get the shots while other doctors tell us we are high priority for the shots because we are much more likely to die from the flu than a healthy person. So what are we to do when we get conflicting info.

[marta]

I'm just confused as to what they mean by causing any form of vasculitisis "temporally" ... I don't see anything temporary about it? Are they trying to say that the inflammation is only temporary to avoid the long-term damages?

Holly's experience was a lot like Marta's which scares the crap out of me. Holly was given the H1N1 shot two months before she developed that cold I had previously mentioned whereby her sinuses wouldn't clear up and needed antibiotics to do the job. She developed the joint pain 3-4 months after that which was the beginning of her journey.

I'd be curious to see if there is a connection -- not saying anything is certain -- so that it can be avoided in the future.

I hate that response of "she was the unlucky one in a million"!!! That is acceptable in the "natural" development of illnesses but when it comes to immunization that is being pushed down your throat... 0 is a more acceptable number.

I agree Daggar, that it sucks to be the anomaly in their study. One in a million seems like just a number when it's thrown out there nonchallantly, but when you or someone you love is 'that one' - it's horrible. You feel betrayed by the system. At least I do. I had nurses tell me I'm completely out to lunch to be even remotely concerned about negative side effects. I was told it's safer than anything else in the medical system. They really went out of their way to convince me to get it for me and Hana because I was a sceptic from the start.

As for the temporal reference, I think they might be talking epidemiology - temporal distribution distribution of events or population in chronological time; a suitable scatter graph may reveal clusters that have epidemiological significance.

Sangye, the only way you can report negative side effects of a vaccine in Canada is to have your doctor report it. Which is why I haven't gone there yet. Every appointment I have with my docs is full of other more important stuff at the moment, and I don't feel like burdening the docs I like with having to fill out this huge form. They have really gone out of their way to minimize reporting of negative side effects. I just find the whole thing so frustrating, and when I have more strength and feel a little more on my feet I will pursue it further, right now the most important thing is to get strong and healthy.