Warning.... morbid post

[Megan]

Hi guys,
Hope this finds you all happy and as healthy as possible. Well, every once in a while I absolutely torture myself by googling WG and always become fixated (and subsequently frightened) on the life expectancy information.

I know you will all say just don't read it but i am a mum of two very small kids and only in my thirties.... not that it matters, none of us want to die from this horrific disease. I was diagnosed 1.5 years ago with it just in my sinuses. I spent a year on MTX and pred but after initially showing promising results I just plateaued and wasn't getting any worse but nor any better. In July I had 2 Rituximab infusions and now down from 75mg of pred to 4mg a day and take 500mg Mycophenalate and some Bactrim daily. I feel fine! Well, a hell of a lot better than a year ago if that's my yardstick. I'm just tired, sore legs but after the infusions I really cant complain.

My question for those able/willing to respond, how is it that some research sprouts good outcomes for those with limited WG who are receiving appropriate treatment whilst others speak of just five at best ten years? I mean really?????
I have just freaked myself out once again and feel dreadful for posting this morbid response, i was just hoping one of you had some current, up-to-date info on life expectancy or any new studies that describe better outcomes??
Any advice would be greatly appreciated.

[renidrag]

I was diagnosed six years ago and have attained remission. I plan on living as long as I normally would have with limits of course. WG left me with neuropathy of the legs and feet and of course somewhat debilitating fatigue however my life expectancy, in my mind is the same as before. That being said, I think some of the material you were reading is somewhat out of date. Twenty years ago, life expectancy from this disease was five years or so. Today, with proper treatment and maintenance I don't think the medical community is putting a time limit on it. My opinion of course.
Dale

[Debbie C]

Hi Megan, First of all Stop reading it !I agree with Dale totally. When I first was dxed and googled it and saw I was only going to live 5 years I burst out into tears. But like Dale said that is outdated material. And luckily for you you just have sinus involvement. There are so many stories on here of people being near death with kidney or lung involvement and have pulled through and living a "new" life. Things will never be they used to be but you were not handed a death sentence. So relax, enjoy your kids and live each day the best you can.

[drz]

Ask your doctors, but my guess is that if your Wegs stays in your sinuses you should have a nearly normal life expectancy. You may have an increased risk of problems with infection from your meds or reduced immune system. You may also like most of us need to be a bit more vigilant about health issues and see medical staff more often than people with no known health problems.

[annekat]

I agree with all of the above, even for those with kidney involvement, when it's caught and treated in time and monitored properly. I am 63, and have sinus and lung involvement which is pretty well cleared up but left some permanent damage. I expect to live at least another 20 years, as long as my dad lived who did not have WG. Maintaining good diet and exercise habits, as well as avoiding undue stress and keeping in touch with the positive and enjoyable things in your life, can prolong your life greatly, and help you avoid flares. We have some great examples on here of people who are going strong, years after treatment for Wegs, and who show no sign of doing otherwise. In your case, it hasn't been that long, the treatment you've gotten has worked, and you feel fine! Things are looking good.

[debra]

Megan,don't listen to those study's! No one can say for sure except God... I should not be standing according to doctors and their studies! I'm untreated,long story,and I know 100% what I'm dealing with. I've been very active with this huge suck factor of a sickness,since May 2012,and had milder symptoms since early 2011. So according to studies I should be gone. I'm here and hopefully will just be starting treatment of some kind soon? No doctor no study can have all the answers. U have doctors treating u,i believe u will do great,and kick the weg dogs a**!!!!!!!!!! Deb. Wishing I could kick his a**!!!!!

[Birdie]

My question for those able/willing to respond, how is it that some research sprouts good outcomes for those with limited WG who are receiving appropriate treatment whilst others speak of just five at best ten years?

Wow, you're not believing those idiots are you? They're bean counters, statisticians... I can count beans in a way that will prove you were never born, but here you are.

So, what you're really trying to figure out is... how do I survive for a long happy life? Studying survival statistics is silly, they don't have anywhere near enough data to accurately analyze anything about our sucky sickness. The very first search result I looked at when diagnosed was from the CDC, it claimed Wegener's was 100% fatal in 2 to 3 months. I was already at five months, at least. Two months later and numerous emails, that CDC page got changed.

So learn all you can and make wise decisions, same as not having Wegener's.

[debra]

Birdie!!!!! Oh snap! Two posts on two different threads posted at the same exact time! To the minute! Birdie,what does this mean? Once I could see,but two,exact? Weird huh? Deb. Thinking I should play the lotto now.....

[Aneinu]

Welcome Megan,

I am new to this forum, but I have read all of what the others have said.
with today's medicine, a healthy life style, monitoring yourself, one can live a prolonged life even with this disease.

Enjoy your family.

[Erin2014]

Hi Megan, don't feel guilty, I too saw these stats after my diagnosis (Oct 2014). I have the big four (kidney, sinus, lungs and ENT) and 3 kids so I was really worried. However, over the last year I've realized that although we are all very sick at the time of our diagnosis, depending on our previous state of health, level of fitness, attitude, etc and with all the advancements in meds and care, most seem to return to their lives (perhaps a new version of that life). In my case, the only doc I see is my kidney specialist and now only every 6 months and the rest of my specialists have released me! No longer on pred, puffers, etc. Only taking azathioprene, Septra and Coversyl. I still do labs every 6 months. I've returned to full-time work and my new goal is to get rid of my pred pug (thanks to others on the site who have inspired me!!) Life is back to normal and I feel pretty good most days. This disease has made me appreciate everything so much more and I don't take anything for granted. Enjoy your kids and look to the future!! I plan to!!!