what age did you first have this?

[Betska]

Curious to see how people first got wg at what age, my nephew was 25 and his started with a sore throat then months later after many failed diagnosis was in renal failure from WG, his is mostly kidneys, hes had it 6yrs now and isnt well right now on 11000mgs of a mix of cyclo and pred etc a week after a 3yr remission. Also has anyone had a transplant and hows that all help or not?

[Al]

Curious to see how people first got wg at what age, my nephew was 25 and his started with a sore throat then months later after many failed diagnosis was in renal failure from WG, his is mostly kidneys, hes had it 6yrs now and isnt well right now on 11000mgs of a mix of cyclo and pred etc a week after a 3yr remission. Also has anyone had a transplant and hows that all help or not?Often you see demographic descriptions of the "typical" Weggie, Betska: upper middle-aged male or female, more often white than black, etc. But the fact is, Wegs is an equal-opportunity scourge. Regardless of race, creed, national origin, or age, we somehow got on the list. There have been (on the forum) reports of 3 year olds. I was diagnosed at 61, though I suspect the disease itself was in place some years before that. Still, is makes me very sad to hear of younger people looking forward to a lifetime of nasty drugs.

A few of us had had transplants, or see such possibly in our futures. This is always a desperation move, and never an elective procedure. For one thing, WG is not actually cured by new organs. In fact, a transplanted kidney, say, can then be attacked in precisely the same way as the old one.

I hope this helps.

Al

[mishb]

Hi Betska,

I was 44 when diagnosed mainly with all head related....sinus, ears, eyes. And then there are the roving joint pains.

On this forum and also on a fb support group, there are many young adults, teenagers and children with WG. It's not particularly fussy, it tackles the best of us.

[malin]

I'm 24 now and I had my first symptoms about a month before my 16th birthday and was diagnosed about 2 months after my birthday. My initial symptoms was ear involvment, at first doctors just thought I had a very bad "dual" ear infection but it didn't respond to any antibiotics and was quickly getting worse, when I finally got diagnosed I had been in hospital for a week due to severe pain, I was practically deaf on both ears and was not really concious, I was awake but I wasn't really "there" if you know what I mean. I had extreme fatigue and was very weak. Once I got the right treatment I started getting better although it took me quite a while to come back to a more "normal" state :p

[Pete]

Hi Betska,

I was diagnosed last year at age 64. My symptoms were an ear infection in my right ear, a non-productive cough, night sweats, and crushing fatigue. I was fortunate to be diagnosed quickly so relatively little damage was done. Now, I feel good and am able to lead a life that's nearly normal.

Pete
dx 1/11

[Betska]

Hi Betska,

I was diagnosed last year at age 64. My symptoms were an ear infection in my right ear, a non-productive cough, night sweats, and crushing fatigue. I was fortunate to be diagnosed quickly so relatively little damage was done. Now, I feel good and am able to lead a life that's nearly normal.

Pete
dx 1/11
yes I see just from these few posts its any ages but what I see as a common early onset is nasal,throat ear infections, makes me wonder if this original infection is a super bug we hear about that some peoples immune system cant fight and it turns on itself. We are told not so much it only ever hits the older people but in this area he is the youngest most are 45 plus we also were told it hits a big proportion of under 5yr olds.I am concerned for his sister, shes constantly got sinus infections that no treatment gets rid of, maybe she should have some tests to make sure its not in her as well , I did wonder about how putting in another kidney would help being this disease is in his system so basically itll just attack the new kidney, or so I assume. Not sure what % of function he has but I know both kidneys are badly damaged, hes really unwell right now but trying to live normal even going to play soccer tomorrow

[annekat]

I was diagnosed last year at age 58, but in retrospect must have had it for at least 2.5 years before that. When the drama started was, like in Malin's case, with a double ear infection that was resistant to antibiotics. It was finally killed, apparently, by the big-gun antibiotic Levaquin. But that was followed by recurring sinus infections, hearing problems, voice problems, joint pains that came and went, etc. I got along that way until 2011, when it hit my lungs badly; I thought I had pneumonia, so I got some tests and the rest is history. I've often wondered, as have others with WG, if there were signs much earlier in life of a predisposition to this. It hasn't been thought of as genetic or inherited, but I just saw a recent post from Palmyra about a new study suggesting otherwise.

[annekat]

I meant to comment on your idea of the "super bug". When I got the antibiotic-resistant double ear infection, even though it was eventually knocked out by Levaquin, my ENT was pretty mystified by it and called it a "really weird bug" and said he'd only seen one case before of one so hard to kill. He took a culture of it but it couldn't be identified, because he waited too long or for whatever reason. Then he put me on a course of strong intravenous antibiotic for several days to guard against mastoiditis. I have to wonder if it was an infection at all or WG mimicking one. But they do say WG can be triggered by infections, and it did appear to die with a strong enough antibiotic. So, who knows.

[mama2005]

I was 23 but it took them a year and a half to diagnose me. It started with joint pain and fatigue and hearing loss.

[pberggren1]

26..........

[Al]

Yes, Betska, a "superbug" could trigger a flare, but then again, a plain old ordinary bug can do the trick as well. Indeed, the presence on an infection and the onset (or recurrence) of disease are often quite separate in time. So anything that causes an immune response can induce a flare.

Al

[annekat]

Yes, Betska, a "superbug" could trigger a flare, but then again, a plain old ordinary bug can do the trick as well. Indeed, the presence on an infection and the onset (or recurrence) of disease are often quite separate in time. So anything that causes an immune response can induce a flare.

Al Come to think of it, I got a "plain old ordinary bug" a few weeks before I got the "superbug" in my ears which ushered in the really observable symptoms that turned out to be Wegs. This was just a mild late-summer cold, but not common for me. There was a lingering cough, and then I went to a Catholic funeral where there was heavy incense dispensed very near me, which REALLY made me cough, and a week or so later I came down with the double ear infection. I've also wondered if the incense had anything to do with the triggering of Wegs.

[mishb]

My sinus infection (the start of all this) was on the night of my fathers funeral........and yes, I was sitting next to the incense.

So there we have it.......the answer to all of our questions...........WG is triggered from incense.:biggrin1:

Now to collect our millions of dollars......who needs scientists anyway :thumbsup::flapper::unsure:

[vdub]

Sinus infections started in '08. I had a raging headache in '10 and was diagnosed shortly after brain surgery in Apr2010 at age 59.

[annekat]

My sinus infection (the start of all this) was on the night of my fathers funeral........and yes, I was sitting next to the incense.

So there we have it.......the answer to all of our questions...........WG is triggered from incense.:biggrin1:

Now to collect our millions of dollars......who needs scientists anyway :thumbsup::flapper::unsure: Wow, that is pretty funny Michelle, in a dark sort of way! The funeral I went to was my cousin's. I remember asking the priest later at the reception where the incense came from, since I knew it was special Church incense and not your garden variety stuff. He told me what Asian country it is made in, I think, but I don't remember. So, getting back to your original point, going to a relative's funeral and sitting too near the incense can trigger Wegs! Who knew? And yes, where's our research money? :biggrin1:

[Dirty Don]

[QUOTE=mishb;61641the answer to all of our questions...........WG is triggered from incense[/QUOTE]

OMG! I was an altar boy in grade school and always had to carry the incenser cuz I was taller...I knew it, I knew it...but won't say it here!! LMAO!!

[ashb17]

My daughter was diagnosed a month before her 3rd birthday. Her kidneys and lungs are affected.

[pberggren1]

How is your daughter doing Ashley?

[me2]

Diagnosed at 20 . Now 55.

[Betska]

Wow so living a long time with it and most likely seeing new treatments and improovements? Your poor little girl Ashley I find it hard on my nephews bad days and all the treatments being so agressive not to mention painful but for a 3yr old? gosh. Lets hope they find something for her soon. Someone posted any infection can make WG reoccur, and it dawned on me a month before this 3rd episode hit my nephew he had a real terrible flu bug, plus even though I thought it was really not a good idea, he asked the renal clinic could he drink a muscle bulking protein shake each day and she for some bizzar reason said it was fine, there was so many things in that shake that are No No for kidney health So I kinda feel the bad flu followed by that drink and bam! oh and I asked today on first test this time his creaton was 180, not 160 its now down to 154 so a really long way to go. I found info on ancient chinese food cures and yin/yang body number balance and simple things that wont hurt he will try eat and see if it helps at all. It was funny we talked all about benefits of healthy eating,fruit vegies salads lots n lots water and then he grabbed a massive pack of twisties asking can he take them home, his mum shouted no you cant. Hes 31 now had it 6 years, he was all doom and gloom today and totally sick of taking meds, as he left with his 2 little daughters he said it was pizza for dinner,lol.I like the sense of humour some of you guys have but better to laugh then cry right?

[renidrag]

57 at diagnosis but probably active for two to three years before. 60 now in drug free remission but starting to wonder if flare is in the neighborhood.
Dale

[freakyschizogirl]

i was 25 at diagnosis but like renidrag i had it for at least 3 years before diagnosis

[JanW]

44 at diagnosis. Symptoms at least 18 months before.

[Sangye]

Diagnosed at 42, started with joint pain, progressed into lung hemorrhage.

It makes me sad to see how young so many of you were at diagnosis. :sad:

[Lightwarrior]

52 at diagnoses, odd symptoms 2 years prior, weg symptoms 3 months prior

[KathyB]

55 at dx with symptoms beginning just a few months earlier...

KB

[drz]

Yes, Betska, a "superbug" could trigger a flare, but then again, a plain old ordinary bug can do the trick as well. Indeed, the presence on an infection and the onset (or recurrence) of disease are often quite separate in time. So anything that causes an immune response can induce a flare.

Al


Again, I say that colds are, with Weggies, nothing to sneeze at. I always take very aggressive action if I sense a cold--or any other infection.

Al






One of Al's lasts posts. Infections........