Couple Questions

[Psyborg]

So I've been thinking about the Wegs symptoms I have, and other than a few of them I've experienced mild versions of them for years. So it got me thinking, (dangerous I know) :p

The first question, have we always had this disease but it was dormant until our first flair? I mean I can remember always having issues with some things that became symptoms with the disease. Or is the frequent issues with those areas just making them susceptible?

Second question, and don't take this as any encouragement of the concept please :p, but can people recover un-medicated? Given the number of people that seem to be misdiagnosed for years, it seems like sometimes people recover from a flair without assistance. Am I just misunderstanding? Again not a endorsement of the idea as obviously this can kill you if untreated. Just wonder what would cause some people to be able to recover "naturally" versus the rest of us.

[Sangye]

I don't believe all of us have always had the disease. I never had any of these symptoms at all. In my case it literally started overnight. I do think that some people have probably had either Wegs or a "ramping up" kind of activity for a long time prior to diagnosis, or even prior to their symptoms becoming pronounced. It makes me wonder if people in those categories would have been able to prevent full-blown Wegs onset with proper care. I don't mean medical care, I mean addressing the root (eg toxicity). This is pretty difficult to prove, since you have to prove that a disease was averted.

As far as your second question, like most autoimmune diseases, Wegs activity occurs on a wide spectrum. Some people with very mild disease-- especially that which is limited to the upper respiratory system-- might go for years without treatment and go in and out of "remission" spontaneously. I hypothesize that it occurs because there is some variance in the underlying cause. For example, if toxins are the cause, then maybe they detox (disease "off") or get exposed to other toxins (disease "on"). After years of doing this, the immune system can become completely dysregulated and the body loses the ability to gain spontaneous remission.

[Jack]

I am the same as Sangye in that I was symptom free until hit overnight with the first symptoms of something that turned out to be Wegener's. This was in the form of a bad sinus infection that did not respond to treatment. However, there are others on the forum like yourself who seem to be able to trace their symptoms back even as far as childhood. Perhaps it is just another aspect of the extreme variation Wegener's seems to be able to exhibit.

As far as mortality, traditionally it is always described as being near 100% fatal within a year of diagnosis if left untreated. I don't think this is quite true, again due to the wide variations. Once it starts to attack major organs (not 100% inevitable) it is more likely to quickly prove fatal. I don't think I would care to take the chance of a medication free cure! ;)

[Jack]

test post ignore.

Sorry, but it won't let me delete this post. ;)

[JanW]

I know exactly that day that I felt this disease first attack my windpipe, which led, in time, to being diagnosed with asthma (this was back in 2005, maybe). For many years, I was fairly stable, and certainly had no other symptoms except shortness of breath. It wasn't until I got the chronic sinus headaches, that I believe that I went into the flaring state that led to my diagnosis (still, close to a year later). I wasn't close to death, or even particularly ill/getting rapidly worse at the time of treatment (e.g., I never went on pred because doctor felt that we had plenty of time to get the inflammation under control). Looking back, I can certainly say that I didn't feel good, but ultimately it was the joint pain and mobility problems that led to the doctors visits, not even the upper respiratory stuff, the fact that I could barely breath through my nose or the fact that my taste was altered. All of this disappeared within six weeks of being treated, thank goodness.

[chrisTIn@]

My doctor says that once the immune-system looses control, it doesn't get it back.
So that is the case when you have a 'full blown Wegener', limited or not.

I have never experienced the symptoms that I got in the onset to Wegener's.
I was always sensible to colds, coughing (that changed when I quit smoking cigarettes. I seldom cough anymore...)
I was allways wearing tissues in my purse for my runny nose...

But I never had the joint pain, stiffness and damaged nose-tissue that I got in the months before I got diagnosed with Wegener's Granulomatosis. So I don't think I always had it dormant.

[chrisTIn@]

As far as mortality, traditionally it is always described as being near 100% fatal within a year of diagnosis if left untreated. I don't think this is quite true, again due to the wide variations. Once it starts to attack major organs (not 100% inevitable) it is more likely to quickly prove fatal. I don't think I would care to take the chance of a medication free cure! ;)

I have always seen other figures:
Wegener's Granulomatosis was, till the seventies of the last century, 80% mortal within a year, and 90% within two years.

Nowadays it's the other way around.
80 % Survives, due to better treatment and earlier diagnose.

[chrisTIn@]

As far as mortality, traditionally it is always described as being near 100% fatal within a year of diagnosis if left untreated. I don't think this is quite true, again due to the wide variations. Once it starts to attack major organs (not 100% inevitable) it is more likely to quickly prove fatal. I don't think I would care to take the chance of a medication free cure! ;)

I have always seen other figures:
Wegener's Granulomatosis was, till the seventies of the last century, 80% mortal within a year, and 90% within two years.
Nowadays it's the other way around.
80 % Survives, due to the better treatment and earlier diagnose.

[chrisTIn@]

I cannot get my last post, that occurred twice, deleted.
Sorry for that.

Andrew? :unsure:

[dunkie2202]

They are good questions Psyborg.... It does make you think.
Ive had Kidney infections off and on since I was 16 and now with WG my Kidneys are completely buggared.
It maybe a coincidence, same as the chest infection I had 3 years ago. Doctors couldn't explain it at the time, I had never felt so sick as that...until now of course perhaps the start of WG??? I had been coughing blood small amounts, a flare maybe? When I was finally dx in Aug I presented at hospital coughing up huge amounts of blood, trouble breathing & back pain and felt like I was dying. So yeah it does make you think.
Another Question : Why would the doctors be so interested in the fact that I had three miscariages prior to having my four son's. That was 28 years ago
Even after the confirmed dx, all doctors would ask the same thing.

[Jack]

90% fatal?
Near 100% fatal?
I don't think we are disagreeing to any great extent. :wink1:

[chrisTIn@]

Okay Jack. If you put it that way...:wink1:
(Still 80% is not 100%. 20% Of the WG-patients seemed to survive anyway. I thougt that was interesting to consider, also given Psyborgs questions...)




Another Question : Why would the doctors be so interested in the fact that I had three miscariages prior to having my four son's. That was 28 years ago
Even after the confirmed dx, all doctors would ask the same thing.

I've had two miscarriages, AFTER I gave birth to my daughter...
(That was twenty years prior to my WG-diagnose)
And yes, the doctor was interested to hear this.
My partner and I checked it out at the time, but there seemed to be no medical reason for the miscarriages. We had a it all investigated at a specialized diagnostic fertility center, and the conclusion was: no medical reason that could prevent us from heaving another healthy child.

[JanW]

I actually think that it's interesting that docs would be interested in the fact that a woman had multiple miscarriages (less than 3, anyway). Miscarriages are extremely common, WG is not!

[Psyborg]

Maybe I'm looking at things backwards, perhaps wegeners attacks the areas you have a history of trouble with. Though that would make me feel extremely lucky it didn't attack my lungs as I've had a TON of issues with bronchitis over the years.

I'm wondering if the miscarriage thing is related to maybe immune system related rejection?

[dunkie2202]

Never even considered that Psyborg but its a very interesting thought....I'm wondering if the miscarriages were a symptom of another disease very close to Wegeners.