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

[marta]

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

[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).