can you have Wegeners just a little?

[little jerry]

I have had Wegeners for 6 years, I think. I am 71 now and I can remember when I was 15 and my joints hurt so bad that I couldnot walk. Drs said "growing pains". In my 20's and 30's it was arthritis they said. In my 40's they just didnt know. In my 60's they said Wegeners, and boy did it come on and try to take me out!
My question is can you have Wegeners just a little? Can you go through life with little-bitty flares that go back to sleep for some time, until you have a #10 flare and they tell the family to get your papers together. A lot of times in my life looking back now it felt the same as a small flare.

[seied]

It appears that there is such thing as "limited" (as you call it, little) GPA, that is GPA without kidney and lung involvement, only sinus and arthritis. I imagine it is not (as) deadly as the "big" full-fledged GPA.

I would think that GPA (limited or otherwise) left untreated will eventually become or come back as the full-fledge fast killer that it is.

Perhaps up until this time you may have been afflicted by the limited kind.

Best of luck...

[drz]

I have had Wegeners for 6 years, I think. I am 71 now and I can remember when I was 15 and my joints hurt so bad that I couldnot walk. Drs said "growing pains". In my 20's and 30's it was arthritis they said. In my 40's they just didnt know. In my 60's they said Wegeners, and boy did it come on and try to take me out!
My question is can you have Wegeners just a little? Can you go through life with little-bitty flares that go back to sleep for some time, until you have a #10 flare and they tell the family to get your papers together. A lot of times in my life looking back now it felt the same as a small flare.

Many people seem to have had a mild case that simmers for a long time before a big flare hits that knocks them out. Many here have asked the same question when they look back on their medical history about earlier symptoms. It seems that when the early symptoms are mild they are often missed or misdiagnosed.

We also know that our residual symptoms often wax and wane so it certainly seems possible to me.

[Lilly]

I was diagnosed in 1990, and was 25yrs old. I had been ill for about a year with ear infections, sinus infections, clogged tear ducts, and the doctors could not understand why I was not responding to anything, and not getting any better. Then after a severe depression as my first marriage ended, I became so sick with joints swelling, muscle pain, red dotted rash on my hands, legs, and then a kidney infection that put me in the hospital. That's when I was diagnosed. But although my kidney infection is what put me in the hospital, my Wegeners Granulomatosis has been "limited". My bladder and kidneys are somewhat involved, because I will have some red blood cells in my urine when I go into a flare, but so far, in the last 27years, that's all that happens. Also, I am what some call a "simmerer". It became apparent to my doctors, in my first year of treatment, that if I was taken totally off prednisone, I would flare right up. So they went down until I was only taking 10mg of prednisone, and this is where my symptoms would back off. I often wonder if after having this for so many years, will my kidneys suddenly begin to get more involved, but so far, its just a good marker to show that my inflammation is kicking up, but without anything but a bladder infection. My flares are harder to pin down now. Wegeners has changed so much in my body, and now my lungs are really getting tired of infections and issues. My sinuses are gone and my ears are crazy. I cant taste or smell, and my eyes water all the time. But hey, that's me! Always changing. Best of luck to you, my fellow simmerer. Take care.

[seied]

My sinuses are gone and my ears are crazy.

What do you mean by that?
--

Never mind, I found you at HealthUnlocked where you described it very well.
Sorry you are going through this.
It appears that I have the same kind (ironic word) of GPA.
I didn't get to the purpura phase probably because I was diagnosed and began treatment very early on 3 months ago.

Best of luck to you.

Ed.

[Alysia]

I have had Wegeners for 6 years, I think. I am 71 now and I can remember when I was 15 and my joints hurt so bad that I couldnot walk. Drs said "growing pains". In my 20's and 30's it was arthritis they said. In my 40's they just didnt know. In my 60's they said Wegeners, and boy did it come on and try to take me out!
My question is can you have Wegeners just a little? Can you go through life with little-bitty flares that go back to sleep for some time, until you have a #10 flare and they tell the family to get your papers together. A lot of times in my life looking back now it felt the same as a small flare.

Hi Jerri,
Great question. I wonder about this too.
I remember ears infection at age 10 with bleeding from my ears. Then at age 17 "atypical arthritis". I had a great old dr who showed me his books and explained to me that he cant find my type of arthritis in them. I also had ulcers on my legs which left scars. The scars disapeared only after I got rtx.
Then for years before the Biggest flare, my wg was smoldering without diagnosis. I had rashes, runny nose, coughing, diarrhea (not sure if it was because of wg in the colon or my new dx disease of collagenous colitis), AND CRAZY FATIGUE. Docs said it was allergies. I went to psychotherapy many years and was accused of being hypochondriac, having psychosomatic symptoms, and even "latent" depression. Needless to say it was pure nonsense. But I beilieved it then. Being clinical psychologist myself I read all the psychoanalytic literature about those issues. It never helped. No wonder.
Until at 2008 I became so sick with "atypical pneumonia". I almost died. It took more time to get the diagnosis of WG and few years to get a decent treatment in addition to my pred, which saved my life.

[gilders]

I was constantly suffering from tonsillitis from a very young age and also had joint pain. I was also told it was "growing pains" and to lose weight.

[Lilly]

Hi Ed, I feel like early diagnosis would really help what has happened to my sinuses. And since I have started to have the "long term" ear problems, I see that I am one of MANY with the exact same issues. I also have had years of tubes in my eyes, to let them drain. I have actually been fitted twice with glass tubes that sit in the corners of my eyes, and drain back into my sinuses. Well I have lost 2 sets!! lol...I have nothing left for them to rest on in my sinuses!! Yes, I am laughing, because at this point, I just say, let my eyes tear all day, I am just not that worried about it anymore. I am tired of surgeries. Take care Ed. Blessings.....Lilly

[sdavidsoncpa]

I have had Wegeners for 6 years, I think. I am 71 now and I can remember when I was 15 and my joints hurt so bad that I couldnot walk. Drs said "growing pains". In my 20's and 30's it was arthritis they said. In my 40's they just didnt know. In my 60's they said Wegeners, and boy did it come on and try to take me out!
My question is can you have Wegeners just a little? Can you go through life with little-bitty flares that go back to sleep for some time, until you have a #10 flare and they tell the family to get your papers together. A lot of times in my life looking back now it felt the same as a small flare.

My daughter is 13 now, she was diagnosed at 11. Looking back, I think she started having symptoms around age 6. She would have recurring styes and repeating episodes of scleritis. She even had a very unusual illness as an infant and was tested for RSV 5 times. They eventually diagnosed her with "non-RSV bronchiolitis."

She started having horrible joint pain at age 11 - they also said it was "growing pains" at first.

So yes, I truly believe you can have Wegener's "just a little." It breaks my heart for all of you going through this. I would give anything to take my daughter's place


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[Alias]

Much of this sounds familiar to me, Lilly. My diagnosis was relatively quick compared to many, but it was still too late to spare my nasal passages and ears. As I write this I have major congestion and roaring tinnitus on one side, which is pretty much my new normal, even though I am currently in drug free remission. After my acute phase and initial treatment, I did regain my sense of smell though. Even though this is called "limited" or "non-severe" GPA, it is still exhausting and frustrating at times. Emotional stress/depression definitely plays a part in severity of symptoms, and my initial symptoms coincided with a very stressful period.