Research into Why?

[Psyborg]

I may be just overlooking it, but it seems like the research is almost 100% focused on the treatment of our disease rather than why we are getting it. It might be my personality type, but it bugs me that they can't isolate to at lease some level why people get our disease. If they can figure that out then maybe they can prevent people in the future from suffering. I know it might not help us that much but if we can prevent someone from going through this then it would be a noble goal in my opinion.

I say this because every time I bring this subject up with a doctor they seem to want to focus me back to treating it like why i developed it is unimportant. I'm not looking for someone to blame (if that is even a possibility), more that it would be nice to be able to isolate the cause.

Am I weird and just missing this, or maybe just asking the wrong questions? Well I know I'm weird...so :w00t:

[marta]

I'm with you Bob, but I too am weird, so maybe it's not such a great endorsment in your corner. :wink1:

[Psyborg]

Weird is relative :)

It was actually your post about the vaccine that got me thinking about it again.

[pwc51]

I posed the question to my Rheumy and he indicated he would be in for a Nobel Prize if he could find the answer as to why - now there's incentive if ever there was one!

[watersedge]

Totally agree with you Bob. There isn't enough information out there about this disease either. I remember scouring the net and printing off pages and pages of stuff for my dad about chronic sinusitis and nowhere did it ever mention that it could be linked to w.g. I never even came across the name, so how are you supposed to even know that sinusitis can be related to such a life threatening disease. Even local doctors seem to have little knowledge about it, they just kept throwing antibiotics at my dad and told him it was the smoking that was irritating his sinuses and to give up.
I personally want to know how my dad got it, what triggered it, what made him more prone to it more than other people. Like everybody else on this forum I'll keep asking the question why? why? why?

[freakyschizogirl]

Another question for you is drug based....Rituximab kills off the B cells and somehow this makes us go into remission. Rituximab works, in a majority of cases, but they dont really know why. Bugs me they havent found out why...but then again if the drug works the drug works.

Finding out the why of the disease would really help me accept and move on. A little it of closure would be nice.

When people are sick and dying the aim is to find drugs that work and i assume then they'd look into the casuses....

[gurinbasra]

You know after asking that question to all the dr's I've visited, one of them said it's because they don't really under the disease themsevles. They don't have all the answers, they don't know why some drugs work on some patients and not others, therefore all they can go by is to see how effective the treatment options are and these are based on results they get from the few unfortunates like us. They don't understand how it begins, what really happens in areas affected, how the different treatments actually work - you know there's the general knowledge that the immune system is to be suppressed. But I guess it's because of this unknown that we don't get any straight forward answers and yes, that's frustrating because with most things, we're used to being told this is what happened to make things go wrong and this is what we're going to do to fix it.

You're not weird, but I think you gotta keep asking because living the way we do is frustrating and sometimes makes us feel helpless.

[Sangye]

It's not just Wegs. Medicine never focuses on the why. For decades they've known many cancers (if not all) are linked to diet but there is zero research done on it. All the money goes to researching drugs.

In holistic medicine we focus on the why. When someone says "That flu is going around" we ask "Why doesn't everyone catch it?" Of course we have ways to treat things once they manifest, but a huge part of our focus is on prevention.

[JanW]

Sangye is right that traditional medicine doesn't ever focus on the whys of disease, and certainly drug companies have every incentive to focus on treatment, and, let's face it, that's where the breakthroughs, such as they are with WG, are coming from. Everything about the disease is poorly understood, it seems, although I will say that in my case, the very first imaging studies of my sinuses indicated WG as a possible cause of my issues. Unfortunately, my doctors dismissed what the computer saw, which happens because this is such a rare disease, and I didn't fit what they had in their minds as a profile -- I wasn't nearly sick enough.

What I think frustrates my surgeon, who has worked on this disease his entire career (so probably 25+ years) is that he can give someone the same surgery I got to open my throat, and it simply doesn't work. Some cases for which surgery is the only possible intervention are intractable and no one knows why. I assume it is the same which cases for which there is only medical treatment -- some people don't respond well, or respond only marginallly, to treatment with the arsenal of drugs we have at our disposal to treat this disease.

[mikecaven]

Let me say this. I am now 63. I first got WG in 1981. I have relapsed twice (3 years ago and 1.5 years ago). I am back in remission now. I do suspect that I had a couple of flare ups that "miraculously" went back into remission quickly (without Cytoxan or Prednisone). As I look back on the past 30 years, it seems that each time I had an issue, my nasal areas were scabby and nasty...which I "suspect" was staph infection / sinus infection that turned into pneumonia... that kicked off the WG. I have found that using Bactroban antibiotic ointment (prescription) twice per day via Qtip in my nose DRAMATICALLY stops the "scabby nasty" bloody type nose...and the WG just does not seem to progress. I have also been on Bactrim and Folic Acid for the last three years. I am doing very well at this time. My Doctor is recommending that I have a Rituxan infusion once a year for the next 5 years. He believes that will keep me in remission. We shall see if he is right.

So...if I were "guessing", I would say that some type of "infection" or "staph" has contributed to my WG. My Rheumatologist says I am just "unlucky"...but he has alluded to some studies that agree with my thoughts about infection kicking it off. My gut tells me that the "cleaner" I keep my nose and sinus areas, the better chance I have to stay in remission.

I am curious others thoughts on this. I am also wondering if I am close to the longest surviving WG person. (30+ years and ticking)? I went 27 years without a relapse (other than one bout with pneumonia).

[Sangye]

I know your rheumy was referring to the onset of Wegs, but I'd remind him that you're one of the luckiest Weggies out there. 27 years in remission!

I wish you knew how often I think of you, Mike. Your long remission has given me and so many others hope. :thumbsup:

[drz]

That long remission is certainly a record to be proud of and I would regard you as a very lucky person to have such good luck.

Most of my flares seem to coincide with infections but doctors say they don't know if the flare causes the infection or the infections caused the flare. Sort of the old chicken and egg question? My last flare was with bronchitis, sinus infections, ear infections, and an eye infection so I agree they some how relate to having a flare.

Interesting about using RTX as a preventative measure since my doctor told me he would only give it if I had a serious flare. I am currently taking azathioprine as a preventative but the plan is to stop that in a year if things look good in interim.



Let me say this. I am now 63. I first got WG in 1981. I have relapsed twice (3 years ago and 1.5 years ago). I am back in remission now. I do suspect that I had a couple of flare ups that "miraculously" went back into remission quickly (without Cytoxan or Prednisone). As I look back on the past 30 years, it seems that each time I had an issue, my nasal areas were scabby and nasty...which I "suspect" was staph infection / sinus infection that turned into pneumonia... that kicked off the WG. I have found that using Bactroban antibiotic ointment (prescription) twice per day via Qtip in my nose DRAMATICALLY stops the "scabby nasty" bloody type nose...and the WG just does not seem to progress. I have also been on Bactrim and Folic Acid for the last three years. I am doing very well at this time. My Doctor is recommending that I have a Rituxan infusion once a year for the next 5 years. He believes that will keep me in remission. We shall see if he is right.

So...if I were "guessing", I would say that some type of "infection" or "staph" has contributed to my WG. My Rheumatologist says I am just "unlucky"...but he has alluded to some studies that agree with my thoughts about infection kicking it off. My gut tells me that the "cleaner" I keep my nose and sinus areas, the better chance I have to stay in remission.

I am curious others thoughts on this. I am also wondering if I am close to the longest surviving WG person. (30+ years and ticking)? I went 27 years without a relapse (other than one bout with pneumonia).

[mishb]

Mike, I saw my ENT last week and have just started with the Bactroban ointment (twice a day) and after 5 days I think that my nose is improving way more than it has for the past 2 years, and believe me, we tried everything, I guess just as everyone of you all have.

I hope after the next 5 days of using it (he only said for 10 days) that things will be much better and I may even be able to breathe through my nose again and maybe start smelling things again. Although smelliing isn't all it's cracked up to be ..... especially when I sit in crowded trains for 2 hours a day with some smelly people, actually perfumes are the worst.

I (like everyone else) wish for, or long for, 27 years symptom free.

I hope things come good for you again ........and for all of us.

[Psyborg]

I'm probably too concrete in my thinking I guess. I know that from the way I think they are severely limited until they know how things start. I'm sure I'd have been a lousy doctor for that reason :)

[Sangye]

Maybe that would make you a lousy medical doctor, but it'd make you a great holistic doctor. :thumbsup: We use logic.

[elephant]

That is wonderful news that you have been in remission 27 years!

[jola57]

Well 27 years is great, here's to all of us attaining that record starting very soon. My nose is unplugged and I don't hack my lungs out with yucky stuff but my sense of smell is still gone. I can identify bitter, salty and sweet. i guess i had a touch of bronchitis so I do hope that my little mini remission keeps getting better and the flare keeps away. so far so good. If I am all right then the theory of infection might not be true (if I do not flare)

[Psyborg]

27 years is amazing from what I can see so far. :) I wonder why some people have such good results and others can only seem to make it from one treatment to the next. Specifically when we talk RTX we frequently mention that the follow up flare risk returns after a year, is that something related to RTX or in general when our immune systems recover we have risk again?

[Sangye]

I got an email newsletter from JHU today, discussing the status of funding for Alzheimer's research. Here are some interesting parts from it. Note what they are NOT researching, even though they have cause to be truly panicked about the numbers of people being dx'ed with Alzheimer's in the next 20 years.

"I don't think there is anybody involved in Alzheimer's research who thinks these major government agencies are spending enough on Alzheimer's disease care and research"

"There are currently 5.3 million Americans with Alzheimer's disease, according to the Alzheimer's Association. Over the next 20 years, without any intervention to slow Alzheimer’s disease progress and with the aging of the American population, this figure is expected to increase by 50 percent. By 2050, it's thought that more than 16 million Americans will have Alzheimer's, and this could easily bankrupt Medicaid and Medicare."

"Family and friends of Alzheimer's disease patients provide more than 80 percent of caregiving. Unfortunately, in 20 years we will also have fewer people to lend a hand for caregiving duties, since the birth rate in this country has been going down. In 20 years, we are going to have a catastrophe on our hands. This is another reason why we urgently need better treatment to delay the onset of Alzheimer’s disease."

Unbelievable--just trying to find better ways of getting people out of the river once they've fallen in! Hint: FIX THE BROKEN RAILING.

[delorisdoe]

My grampa is 97 yers old and was diagnosed with alzeimers in his early 70's...off topc, sorry

[drz]

I have been wondering about the frequency of GPA (WEGS) Most of the medical sites and doctors quote the 1 in 20,000 or 30,000 people but this seems too low by my personal observations. For example my internist is a small town local clinic has three of us on her caseload. She is not a Weg specialist and there would be no reason for her to have an unusually high number of GPA patients. Most primary care doctors tend to have a caseload of 1000-2000 patients and I would guess she at the lower number or even less. So that makes 3 per 1000.

Likewise I doubt I know more than 1000-2000 people by name or sight including friends of acquaintances. I know of five people with this diagnosis in our town without making any effort to find others. True people some times tend to tell you about their friends who also have the same "rare" disease and one did contact me to get support and info since he knew little about it and wanted to compare notes.

How many people do you know of personally in your area who also have this "rare" disease? I am wondering if the frequency is not closer to 1 in 250 instead of 25,000 just based upon the examples given.

What is your experience on frequency?

[pberggren1]

I am from a small city of 17,000. I know of one other lady in town here. I have also met another guy on a farm about 25 minutes out of town.

I have talked to many other docs around always askin them how many cases of Wegs they have seen. The most any one doc from Saskatchewan told me was about 12. I still thinnk the 1 in 20 to 30 thousand is more correct than 1 in 1,000 or so. I am sure that I would have met other Weggies already here in town if the lower number was correct. I know most of the docs around here and they all know that I am interested in meeting other people with vasculitis. I have asked many GPs and specialists in this area if they have other patients with Wegs. They all say no, except my doc who has me and one other guy. The other lady sees a doc in Saskatoon. Saskatchewan's population is about 1 million with an overall area of about the size of Texas. But about one third of the area is a forest, so most of that area is very underpopulated.

[JanW]

I have never met other people with any kind of vasculitis except in online or in person support groups.

[delorisdoe]

I have never met other people with any kind of vasculitis except in online or in person support groups.

ditto:unsure::unsure::unsure:

[Sangye]

Same here.

I imagine many people might have moved out here to be closer to JHU's Vasculitis Center. Even so, I haven't met anyone else with Wegs or another form of vasculitis!

I looked on the NORD website for current numbers. I couldn't find them, but I did find another rare condition called "Wandering Spleen." I can't help wondering what the Monty Python guys would do with that. ROTFL http://www.smileyhut.com/laughing/rofl.gif (http://www.smileyhut.com)

[freakyschizogirl]

I've only ever met one other weggie in the flesh, whilst waiting for ENT at Addenbrooks, but this is all.

[delorisdoe]

I could wait in the waiting room of my specialist for weeks on end and probably still never meet a wegeners patient

[Psyborg]

When I had my Bronchoscopy I believe all but one person in the surgery prep area were Wegs patients. Was strange seeing so many people with the same issue at once (to me I mean :p)

[drz]

When I had my Bronchoscopy I believe all but one person in the surgery prep area were Wegs patients. Was strange seeing so many people with the same issue at once (to me I mean :p)

Maybe we are Wegs magnets:biggrin1:.

[pberggren1]

My doc said today that Wegs is much more prevalent then what we think it is. He diagnosed a 74 year old man with Wegs last week.

[freakyschizogirl]

There seems to be a staring game in the Vasculitis clinic in Addenbrookes. Whenever i go everyone looks around at each other trying to guess who has what. Think i'll buy one of the wegs hoodies and see what interest i gain from that, and maybe some new friends too, lol.

[Sangye]

ROTFL That's true at JHU Vasculitis Clinic, too! Dr Seo is very punctual though and I never get to actually wait and meet others. All my other doctors run late. The only waiting room I don't mind waiting in is the only one I don't get to wait in!

[pberggren1]

My doc is very punctual as well. The longest I ever had to wait was about an hour but he had an ER emergency he had to tend to because there was an auto accident. But my doc only has 2 other Wegs patients anyway. I never asked him about other vasculitides though.

[elephant]

I never met a WG in the flesh, but mabey someday.

[Kami]

I live in a small town of 3150 and about 10,000 in the area and there is one other Weggie in town. I met her when I got sick, she heard about me and called my friend and then we got in touch. I haven't talked to her in a long time, I should try and see how she is doing. My Rhuemy is at the University of MN and he has been there 15 years and he says he gets about one new Weggie patient every year. There are other doctors at the University that also treat Weggies though so I don't know how many total a year get diagnosed there. That would be interesting, and why wouldn't they all have the same doctor so that doc would be like the weggie specialist of the University??? Hhhmmmm??????????

[michael99]

have any of you heard about any tests/research they are doing where they believe bacteria may be the cause?? it seems some Doctors may think a certain class of bacteria maybe to blame along with our predisposition (genetically).

[pberggren1]

Never heard of this.

[Sangye]

I haven't heard of any specific research. The hypothesis that Wegs is due to an underlying infection has been around for a long time, though.

[dennis2512]

reading this has made me feel alot more positive about wg was diagnosed 4 weeks ago and its alot to absorb.

[watersedge]

Hi all, came across this article regarding Staphylococcus Aureus

Arthritis Research & Therapy | Full text | Staphylococcus aureus and Wegener's granulomatosis (http://arthritis-research.com/content/4/2/77)

[Sangye]

The link doesn't work :ohmy:

[watersedge]

Arthritis Research & Therapy | Full text | Staphylococcus aureus and Wegener's granulomatosis (http://arthritis-research.com/content/4/2/77)

[watersedge]

Thats the second time its done that, I typed in the full http: version and then the above just keeps coming up!

[jola57]

I read this article as well, its what makes me think that the infection theories may have some merrit, and agree with the genetic predisposition. Add environmental factors, and there you have it.

[drz]

Arthritis Research & Therapy | Full text | Staphylococcus aureus and Wegener's granulomatosis (http://arthritis-research.com/content/4/2/77)

Great research study. Thanks for posting this. The research is promising even though it does not provide any answers yet.

[watersedge]

Thanks drz, hope you are keeping well.
Daddy had chronic sinusits for almost ten years, no ear or eye complaints, nose bleeds, coughing up blood, rash, kidney or lung complaints just the sinusitis itself. I find it hard to believe that he could have had w.g. all that time without any other symptoms. Somewhere along the line the sinusitis turned into w.g. and something triggered it, maybe the body constantly fighting a staph infection that had been festering for years was the turning point and the wegs set in. I hope they continue to research this aspect of things.

[Sangye]

It could be that your dad did have very mild involvement of Wegs for many years. Some people do and then something makes it go into full-fledged disease.

I think the infection theory may apply to some people, but I didn't have any signs of infection prior to Wegs. I have a hypothesis that Weggies with a lot of sinus involvement might have Wegs that was triggered by infection.

[delorisdoe]

I wonder though, if maybe we dont remember infections that could have started it all. I know I myself let myself get very sick before I seek treatment. I think back to how when my daughter was walking but still in a crib I had strep throat, she was still in a crib when I had my first big flare. That is as much detail as I can remember. if I had not remembered her being in a crib and standing up crying wanting me to lift her out when I couldnt I dont think I would remember the infection and my first flare. Both times I did not have the strength to lift her out. I really suck at making sense. lol. jumbled up is how I roll.

[Sangye]

I rarely got sick before Wegs and didn't have anything complicated. I only got colds every 5-6 years.

[watersedge]

I know what you mean Delorisdoe about remembering when you had the infection that you think yourself changed things and could have been the start of it all. Daddy always said it was Christmas 2000 when he had his. He had never had a sinus infection in his life before and there was a flu epidemic in the U.K. and Ireland at the time. Whatever infection or flu he caught that year lingered and he suffered with sinusitis from then on. That was when it all began for him.
It is strange Sangye how different people are affected, the symptoms can vary so much from person to person. I wish there was more knowledge amongst local doctors about w.g. Maybe when someone goes in with sinusitis that doesn't clear up that they would be more aware of the fact that it may not be due to a cold and pass it off as just a minor complaint and really consider that it can be linked to diseases such as w.g. There just isn't enough knowledge about the disease out there!