Results of Univ. of Penn visit

[lovetoswim]

Wait until your insurance gets billed $40k for a two-dose course of rituximab. My doc had to get a pre-authorization (took about 10 days). After treatment, insurance paid about $8k and I paid a $20 copay for each dose. Hoping you're as fortunate as I.

Wow, how many doses do you take per year? We can't ever win the argument with insurance companies. My BF never gets sick, but this past year, she was almost as sick as me, and can't even get her insurance to pay for a prescription nasal spray! They would rather her get pneumonia again, have to get xrays, ct scans, and multiple doses of meds. Ugghh

[Pete]

I'm planning on one 1 gm dose later this year.

[annekat]

I wonder if the previous ANCA results were in error. Will be interesting to see if her test shows the same. As for recurring sinus infections, I always got pred along with antibiotics, pre WG dx, until my ENT decided I was taking too much pred. Little did he know, about my future use of pred. Anyway, same thing, the infections would clear up and then come back. I think you can have sinus infections and Wegs at the same time, even though Wegs "mimics" infections and won't itself respond to antibiotics. But it creates so much inflammation that sinus passages become blocked and bacteria can build up which will respond to antibiotics, but so much Wegs inflammation will create a viscous cycle. Which is where prednisone comes in to help. In my case, the sinus infections eventually stopped with WG treatment because continued pred opened things up and allowed drainage of sinuses. I was only prescribed antibiotics for a short time after dx. Ultimately, most of the bony structures of my nasal cavity eroded away, including the parts of the sinuses where mucus and bacteria could become trapped. It sounds awful, but my ENT said I'd never have another sinus infection again, and I haven't.

[marta]

Met with the Rheumy who specializes in vasculitis. She couldn't really explain the high pANCA, besp, since the PR3 and MPO were normal. She ran ANCA blood work and a urine sample.

I told her that I had at least 5 rounds of antibiotics last year which resulted in me getting better for a few weeks, then getting sinus infections back. Finally, after a 2 weeks of antibiotics and prednisone, it cleared up. She said with Wegs, antibiotics don't work. If I get sick again, i should not take prednisone with the antibiotics, so she can see if the antibiotics work. fine, except I reminded her that the sinus infections would not clear up until the doc added prednisone to the mix. So I left confused.

Results in a week. If ok, just follow up with her in September.

To me this sounds classic WG early days.
I am pretty sure most of us on the forum went through various attempts at antibiotics (myself included) and only after the pred did symptoms start to subside. The reason for this, in my humble opinion, is that there was no infection to start with. WG behaves like infections for all of us. A sinus infection, lung infection, ear infection all feel the way they do because the inflammation that is the body's reaction to an infection, is what gives us the horrible symptoms. We don't feel gross because of the actual infection but because of our body's immune response to that infection. WG is an immune response without an actual invader triggering it. So we feel all the symptoms of an infection without actually having one. We get treated ad-nauseum with antibiotics to remove the offending bacteria/virus/fungus without any result because there is no offender. The only offender is our immune system reacting to a self perceived phantom. This is why the pred works so quickly with the symptoms. Because the pred reduced the inflammation that is our immune system's response and also the cause of all the discomfort, and now you are not experiencing the previously perceived 'infection'. There was never any infection. It has always been a rogue immune system response. I can almost guarantee you that if you went on a WG treatment protocol, you wouldn't experience this type of infection again (unless you catch one while on treatment with a weakened immune system - that pesky risk/benefit ratio)

I hope that made sense.

[vdub]

I am pretty sure most of us on the forum went through various attempts at antibiotics (myself included) and only after the pred did symptoms start to subside. The reason for this, in my humble opinion, is that there was no infection to start with.

Yeap, it took a lot of antibiotics, 2 ENT's, and about 5 docs to go nowhere over the course of 2 years for me.

[annekat]

Yeap, it took a lot of antibiotics, 2 ENT's, and about 5 docs to go nowhere over the course of 2 years for me.

About the same​ for me vdub, but just one ENT and a pulmy, plus allergy shots thrown in for good measure...

[vdub]

Shortly after being dx'ed, it seems I read that 24 months was about the normal period of time for a GPA dx.

[lovetoswim]

To me this sounds classic WG early days.
I am pretty sure most of us on the forum went through various attempts at antibiotics (myself included) and only after the pred did symptoms start to subside. The reason for this, in my humble opinion, is that there was no infection to start with. WG behaves like infections for all of us. A sinus infection, lung infection, ear infection all feel the way they do because the inflammation that is the body's reaction to an infection, is what gives us the horrible symptoms. We don't feel gross because of the actual infection but because of our body's immune response to that infection. WG is an immune response without an actual invader triggering it. So we feel all the symptoms of an infection without actually having one. We get treated ad-nauseum with antibiotics to remove the offending bacteria/virus/fungus without any result because there is no offender. The only offender is our immune system reacting to a self perceived phantom. This is why the pred works so quickly with the symptoms. Because the pred reduced the inflammation that is our immune system's response and also the cause of all the discomfort, and now you are not experiencing the previously perceived 'infection'. There was never any infection. It has always been a rogue immune system response. I can almost guarantee you that if you went on a WG treatment protocol, you wouldn't experience this type of infection again (unless you catch one while on treatment with a weakened immune system - that pesky risk/benefit ratio)

I hope that made sense.

I understand what everyone is saying, but if my blood work shows that there are no high ANCA levels, wouldn't that be sufficient to say I do not have WG?

[annekat]

I understand what everyone is saying, but if my blood work shows that there are no high ANCA levels, wouldn't that be sufficient to say I do not have WG?

No, because low or non existent ANCA score is not a reliable indicator. Mine was very low, almost non existent, but I definitely had WG. But given how good you've been feeling, and if other indicators in your blood work look good, I'd say yes, there'd be considerable doubt that you have WG.

[marta]

I understand what everyone is saying, but if my blood work shows that there are no high ANCA levels, wouldn't that be sufficient to say I do not have WG?

My ANCA has never been an indicator and has very rarely been elevated from onset through my flares, and even then never to a point that would make any doctor flinch.
The most reliable source of WG verification is a biopsy where granulomas are discovered.