Your experience with the healthcare system when you first began suffering from GPA?

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Originally Posted by seied

Attachment 2636Attachment 2637Attachment 2638

Sure, please see attachments.
It's hard to read, so here is the actual text:



ANCA VASCULITIDES
PROTEINASE-3 ANTIBODY 71.0 H

Since patient sera may contain heterogeneous antibody
populations, caution should be utilized in interpreting
results > 8 due to varying degrees of non-linearity.
Value Interpretation
<1.0 AI: No Antibody Detected
>or=1.0 AI: Antibody Detected



Autoantibodies to myeloperoxidase (MPO) are commonly associated with the following small-vessel vasculitides: microscopic polyangiitis, polyarteritisnodosa, Churg-Strauss syndrome, necrotizing and crescentic glomerulonephritis and occasionally Wegeners granulomatosis.
The perinuclear IFA pattern, (p-ANCA) is based largely on autoantibody to myeloperoxidase which serves as the primary antigen.These autoantibodies are present in active disease state.

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The Rheumatologist suspected I had contracted parvovirus, and so I hoped.
After 4 weeks of nasty arthritis all over, parvovirus goes away in 6-8 weeks, I was waiting for
all this pain, weakness, fatigue, etc. to go away.
All 3 prior doctors failed to diagnose or even suspect GPA.
When Quest results came back 2 days later, 8/22/2017 (yes, that fast), everything changed.
Existing Chest X-rays, tendonitis, sinusitis, urinalysis, atonia, etc. GPA was the cause.


Ed.

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Thank you.
If I understand correctly, then your Dr. Made the diagnosis of WG according to your Pr3 which is part of the anca battery. Some docs dont use only this one and want more tests. That was my case.
Also, I think that those tests can be done on your regular labs tests. @Pete might know. I hope you didnt have to pay to Quest in order to do them.
Welcome to the forum. If you feel like you are invited to share your story under "new members introduction".

@Alysia, I don’t recall having c-ANCA, p-ANCA, or pr-3 testing at disease onset. I didn’t even know what GPA was when I was diagnosed. Dr Villa Forte did do these tests when I first saw her about 16 months after I was diagnosed, and all three were positive for GPA.

My current bi-monthly labs are a CBC, CMP, sedimentation rate, C-reactive protein, and urinalysis with microscopy. If blood is present in the urine, the cells have an appearance that is unique to Vasculitis, indicating that treatment is necessary to protect the kidneys.

Actually, we were hoping I had contracted some kind of virus, such as parvovirus, which causes all those rheuma symptoms, but it's supposed to go away in 2 months.

I had the sniffles (with a little blood), a lot of joint pain, and extreme muscle weakness. I thought I had dengue or some other bad flu.

I went to see an orthopedic dr for muscle pain and weakness, dx'ed tendonitis
I went to see a primary care dr for weakness and pain, who ordered some blood tests which came out ok.
I went to see a ENT dr for sniffles and blood, who thought I had a sinus infection, ordered steroids and a nasty antibiotic, I did not take either.
At this point, I could barely walk and get around.
Finally, I went to seee a rheuma dr, ordered the blood tests which came in with the 'unexpected' diagnosis of GPA.
Dr #4 diagnosed GPA thanks to Quest Diagnostics blood test.


All this happened within 30-45 days.

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shadyladylovesslim said:
Today 07:19 PM
Default New member. Newly diagnosed.
Hello. My name is Amanda. I'm 33 and I live in Missouri, USA. I was diagnosed with GPA in August of this year. It was a very scary deal. I was close to death. I had been sick for months and doctors couldn't figure out what was wrong with me. Constant runny nose, cough, vomiting and nausea, loss of appetite, weakness, dizziness, fatigue, ear pain. I broke my elbow and sprained my wrist the same day from two separate falls that I had because of the dizziness. Originally, I thought I had a bad ear infection. I had pain in my left ear and lost some hearing in that ear for a few weeks. Went to the doctor several times and they found no infection and said my ears looked fine. I got more and more sick as time went on. Spent months in and out of emergency rooms trying to figure out why I wasn't getting any better and antibiotics weren't working. They just kept treating my symptoms and sending me home. Not trying to find the underlying cause. No hospital close to me wanted to admit me to figure out what was goingLouis Finally my grandmother mentioned Barnes Jewish Hospital in St Louis (about 45 minutes from me). We went to their emergency room when I was extremely weak and hadn't kept any food down for over a week. I'm also a type one diabetic so the fact that I couldn't keep food down put me in DKA. They admitted me right away. They had to put me on an insulin drip bc of the DKA so I was admitted to the intensive care unit (ICU). They did a chest x-ray and told me I may have pneumonia bc they found liquid in my lungs. They scheduled a scope for the next day so they could get a closer look at my lungs. That night, I began to cough up blood. They moved my scope to early the next morning. Next thing I know, I wake up 2 and a half days later with an IV in my neck and a breathing tube down my throat. I didn't have pneumonia. It was blood in my lungs caused by the vasculitis. They took a biopsy of my lung to confirm GPA diagnosis. They kept me in a medically induced coma for two days so they could stop the bleeding in my lungs. Had to have 3 blood transfusions and plasma treatments. Was in the hospital for 12 days. I was still very weak, had trouble walking. I'm now on Rituximab and Prednisone. They are watching me closely but I still don't know a lot about this disease. I'm glad i found a group of people that I can relate to about this since it's so rare. Thank you for this opportunity.

I was diagnosed in Australia. Initially my eye lid swelled. I had a Dr tell me I shouldn’t be so concerned with my appearance. I was really embarrassed & waited several weeks to follow up. Eventually, after several months, was diagnosed. I moved to America. I am also diagnosed with “limited” form of WG. Because I don’t have any organ involvement a lot of rheumatologist would not progress my treatment when I would have a flare. Only because my quality of life was affected. At one point my joints were so bad I could barely walk. It took a long time before someone would help me.


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A lot of what your wrote sounds familiar and similar to my experience. I was misdiagnosed with pneumonia too from bleeding in the lungs. And several other things too and the hospital where I went for treatment were clueless as to what was causing my rapid demise. When they figured out with help from a Mayo consult that it was probably Wegs they had to find some other hospital that knew how to treat it. Mayo would not accept me since I had just gone on Medicare the day after my admission. I did get good care at the U of MN hospital where they knew how to manage my type 1 diabetes and Wegs. My intubation was a couple weeks. While there I went in and out of ICU over a dozen times. I was fortunate to scrape by without needing dialysis even though my kidneys were hard hit. My hearing and balance never did recover.

In the preceding couple years before diagnosis I had also seen a dozen different specialists at several different clinics over two plus years for my various symptoms like nasal crusting and nasal bleeding, roving joint pains, blood in my urine, fatigue etc but no one could figure out that it was Wegs causing all the symptoms. They just ruled out a lot of other things but never came up with any treatment that offered me much help.

I think doctors today are a bit better at recognizing GPA so most people get diagnosed sooner and don't have to knock on deaths door first to get a correct diagnosis.

Recovery can be slow if you are older and also have diabetes too but I have made a lot of progress since my diagnosis over year years ago. I spent most of my year after diagnosis in hospitals and nursing rehab facilities but eventually got to point where i could live by myself in a light-assisted living facility. So be patient and find good treatment staff and things should get better for you after awhile. Best wishes for better health again.

Unless you are one of the lucky ones to get a quick answer, this sounds very familiar to all of us I think.