Research into Why?

[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.

[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. 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