Why I am grateful to have Wegener's

**JanW** · 12-17-2010, 01:05 PM

I will grant you that if these stats also reflect patients for whom WG was discovered at autopsy and there had been no attempt at treatment, you could reach that 25 percent in five years number.

I don't buy that 75 percent of people will be dead in 10 years where the primary cause of death is WG, however.

I'm only coming up on one year diagnosed, and have met a lot of weggies though, so I will allow that my view could be skewed.

**elephant** · 12-17-2010, 03:35 PM

I could see the 25 % percent range in five years because of wrongly being misdiagnosed ( JanW re: autopsy) or WG patient not getting the right care because of ( financial, not understanding severity of the disease, too far to get to a specialist) and thinking that their primary care doc / Rhuemy non specialist can't really handle this WG.
I am with the rest I don't agree with the 75% of us dead in ten years. I had this disease for a very long time( over 30 yrs) and I was even misdiagnosed/ non-compliant with medication/ medical mismanagement/kidney failure....I am still alive and kicking! I have been on medicine for 30 years, never been medicine free and I am 45 years old. That is pretty darn good, I think!

**vdub** · 12-17-2010, 04:08 PM

Really a super interesting thread. Personally, I'm PO'ed as heck that I have this disease. I feel bad or, at least not normal, most of the time and I know that feeling is as good as it's going to get pretty much forever.

As already mentioned, one good thing about wg is that it does make you think about things in a new way and face your own mortality. As for me, i'm figuring on 6 to 8 years from now. I believe that way partly because of what has already been said, but I also have to add on top of the wg my panhypopit issue (which was caused by the wg). One study from the UK (not having anything at all to do with wg) said that being panhypopit causes a 1.3 to 2.2 fold mortality rate above an otherwise healthy person. It doesn't take to much cipher'n to figure out that my days are limited. That having been said, no doctor has every even hinted that my days are numbered. But I can do the math....

**Minneapolismark** · 12-17-2010, 04:41 PM

I'm with ya vdub.

I can't move my left arm above mid-chest because of the incredible pain in my shoulder. I get these back pains that feel like a large nail has been driven into my right shoulder blade. I have been having terrible sharp pains in both calves. I have that "broken glass" feeling in my knees. I am always winded and often paranoid. I post something and then fear that I will have hurt someone or caused them to be angry and fret about it.

I forget major things. I lose focus. My hearing goes in and out. My vision gets blurry... for the first time in my life I am physically weak.

And this is me responding well to treatment. This is me with SED rate down around ten from over 100 and I am this sick.

Before treatment I was a real mess. I was actually paralyzed intermittently. I was bleeding from major orifices. I coughed up blood for a while but then it stopped. One night in particular I felt a terrible cold deep in my body and knew that I was very near death.

I don't like being weak. It kills me that my beautiful wife drops me off and picks me up at church, restaurants. She has to do the majority of the housecleaning and shopping. She has an executive job.

I don't like not being able to sit upright for more than an hour or two most days.

I don't like the times when I could not get my jaw closed because my jaw hinge has been pushed out of position. (this has not happened in a long time)

I was very angry that I could not run, jump, play. I hate being hauled in a wheel chair at the airport.

My plan to climb Kilimanjaro is probably off for a while, maybe forever.

I hate the disease.

Never the less there have been benefits. would I voluntarily get the disease to learn these lessons? No, of course not. On the other hand I simply won't let this experience go to waste. So I have passed through the Kubler-Ross stages and am now at acceptance.

I don't like that my hands are numb some times. I don't like that I can't sleep much, or I can't wake up depending on the day.

But I am not simply going to roll over.

And even with all this crap, life is still big and bold and amazing. There is still so very much that I can do, and instead of imploding I intend to grab every second I can get my hands on. I intend to make each day suck as little as possible. And there have been benefits to this experience.

I found that I am strong enough to not only cope but live large.

**Minneapolismark** · 12-17-2010, 04:51 PM

Originally Posted by elephant

I could see the 25 % percent range in five years because of wrongly being misdiagnosed ( JanW re: autopsy) or WG patient not getting the right care because of ( financial, not understanding severity of the disease, too far to get to a specialist) and thinking that their primary care doc / Rhuemy non specialist can't really handle this WG.
I am with the rest I don't agree with the 75% of us dead in ten years. I had this disease for a very long time( over 30 yrs) and I was even misdiagnosed/ non-compliant with medication/ medical mismanagement/kidney failure....I am still alive and kicking! I have been on medicine for 30 years, never been medicine free and I am 45 years old. That is pretty darn good, I think!

Actually, in the case of misdiagnosis and improper treatment, the statistic is 95% fatality at five months.

AGAIN THIS DOES NOT MEAN THAT ANY ONE OF US HAS A 75% CHANCE OF DYING AT TEN YEARS!!!! I agree with you on that.

These statistics do not mean that any of us personally have these odds.

These statistics mean that the Weggie population as a whole has these statistics. So YES this includes those who were not diagnosed, those who were improperly treated, those who didn't get engaged in their care, those who just didn't do the right thing, those who got depressed and gave up, those who didn't wash their hands after they pooped, etc.

But these ARE the statistics. So for each of us we could say that the chances of survival at ten years is 25%, but add 25% if you have a good doctor, and add 25% if you are super engaged in your care. But folks we are in the fight of our lives.

And our doctors are only going to be as good as the information they have about our disease. If they are too pessimistic then they will over treat. If they are too optimistic they will under treat.

I would be absolutely ecstatic to have someone provide statistics that show the 2006 stats from the Journal of Rheumatology to be wrong! These aren't my stats.

Also Elephant, you may just simply be one of the 25% who makes it.

**vdub** · 12-17-2010, 05:01 PM

Ah, the paranoia..... Ever had steroid psychosis? Dang, I never want to feel that way again. Ended up in the ER and then in the psych ward for a night until the steroids went thru my system.

I don't think anyone is "typical" wg. I'm getting the sense that it affects all of us very differently. I'm on treatment drugs for the wg -- mtx and then, of course, folic acid because of the mtx. But for the panhypopit, I'm on cortef, levothyroxin, desmopressin, testostorone, B-12, and Vitamin D. And, to counteract all the side affects of the drugs, I'm on celexa and ambien. There's just too many darned drugs. I have headaches ranging from mild to OMG most all the time. I thought the granuloma was growing in my head again, but an MRI proved different. I guess the headaches are just something I have to accept and live with.

**Minneapolismark** · 12-17-2010, 05:18 PM

Originally Posted by vdub

Ah, the paranoia..... Ever had steroid psychosis? Dang, I never want to feel that way again. Ended up in the ER and then in the psych ward for a night until the steroids went thru my system.

I don't think anyone is "typical" wg. I'm getting the sense that it affects all of us very differently. I'm on treatment drugs for the wg -- mtx and then, of course, folic acid because of the mtx. But for the panhypopit, I'm on cortef, levothyroxin, desmopressin, testostorone, B-12, and Vitamin D. And, to counteract all the side affects of the drugs, I'm on celexa and ambien. There's just too many darned drugs. I have headaches ranging from mild to OMG most all the time. I thought the granuloma was growing in my head again, but an MRI proved different. I guess the headaches are just something I have to accept and live with.

No, there definitely is no typical Weg. I don't know that I've experienced steroid psychosis, but then a psychotic probably wouldn't know, would they?

It is getting better for me, but early on in my treatment it was pretty tough. I had to tell my sons (24,22 and 14) that if they get a text from me telling them that I love them, or asking a question like "are you OK?" or "do you still love me?" to not analyze it but just answer it as quickly as is convenient. I explained the whole side effect thing.

But I seem to have settled down a bit over the past couple of months.