Results of Univ. of Penn visit

[lovetoswim]

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. :confused1:

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

[Alias]

In my case I had been treated with several antibiotics before GPA diagnosis, and had no improvement from the antibiotics. Pretty common story on here, as it turns out.

What about your other lab work, such as your ESR and CRP. Maybe you've mentioned it already, but do those tests show that you have some widespread inflammation, or are they normal? I'm not quite clear on why GPA is a strong suspect for causing your problems? In any case, fingers crossed for helpful lab results and some resolution to the mystery.

[MikeG-2012]

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

Without a proper culture of the sinus infection, to determine the proper antibiotic for the particular strain of bacteria, bombarding the body with random antibiotics does not work. Your ENT should be culturing every infection you get and looking at the pathology report to determine which antibiotic will work. The pathology reports my ENT gets always recommends the proper antibiotic. I'm on doxycycline right now for the infection I have going on.

After 9 years of having bad ENTs prescribing boatloads of medications without culturing the infection, I would vehemently say, NEVER AGAIN!!!

My ENT I have right now is a Rock Star!!!

[Alias]

Absolutely. And after being treated with different antibiotics in rapid succession, as I was for my supposed ear infection, any culture is not going to be reliable. Not very helpful when one is acutely ill.

[lovetoswim]

In my case I had been treated with several antibiotics before GPA diagnosis, and had no improvement from the antibiotics. Pretty common story on here, as it turns out.

What about your other lab work, such as your ESR and CRP. Maybe you've mentioned it already, but do those tests show that you have some widespread inflammation, or are they normal? I'm not quite clear on why GPA is a strong suspect for causing your problems? In any case, fingers crossed for helpful lab results and some resolution to the mystery.

Alaskatom, I don't see ESR and/or CRP on the blood work. What do those indicate?

[lovetoswim]

Without a proper culture of the sinus infection, to determine the proper antibiotic for the particular strain of bacteria, bombarding the body with random antibiotics does not work. Your ENT should be culturing every infection you get and looking at the pathology report to determine which antibiotic will work. The pathology reports my ENT gets always recommends the proper antibiotic. I'm on doxycycline right now for the infection I have going on.

After 9 years of having bad ENTs prescribing boatloads of medications without culturing the infection, I would vehemently say, NEVER AGAIN!!!

My ENT I have right now is a Rock Star!!! Hi Mike, the ENT that I try to see whenever I have sinus issues is a sole practitioner and is very difficult to get an appointment with when one is sick. Consequently, I ran to urgent cares (especially since the worst was over the Christmas holiday season). When I finally got to see him, I'd already seen one quack ENT, and urgent care several times. My ENT did a culture and I got the appropriate treatment and it finally cleared up, however it took doxycycline and prednisone.

That culture was a $500 test, covered by my insurance, but I doubt that everytime I see an ENT, they would do that culture. How often do you get sinus infections?

[MikeG-2012]

I get infections probably 2-5 times a year. It is almost always staph. Each time it seems to be a different strain too.

I understand that the tests are expensive, but what does it cost the insurance to have you go back for an office visit 3-4 times for the same infection? With this disease, EVERYTHING is complicated, and treatments and tests are going to cost insurance, and us patients, money. Sad to say, but when we have wegs, we are expensive!

I have really good insurance and they pay for just about anything that I need. I am truly blessed to be working at this college. Without this job, and the insurance, I would have probably lost my house by now.

[Pete]

Hi Mike, the ENT that I try to see whenever I have sinus issues is a sole practitioner and is very difficult to get an appointment with when one is sick. Consequently, I ran to urgent cares (especially since the worst was over the Christmas holiday season). When I finally got to see him, I'd already seen one quack ENT, and urgent care several times. My ENT did a culture and I got the appropriate treatment and it finally cleared up, however it took doxycycline and prednisone.

That culture was a $500 test, covered by my insurance, but I doubt that everytime I see an ENT, they would do that culture. How often do you get sinus infections?

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.

[Alias]

ESR (sed rate) and CRP (c-reactive protein) are non-specific markers of inflammation. Elevated levels can mean different things, but they are standard tests in helping to diagnose and monitor GPA disease activity. Frankly I would be surprised if you have not had these tests, especially if you have been worked up for GPA by a rheumatologist. Others can chime in if their experience was different, but I think the initial standard workup when GPA is being considered is blood testing for ANCA, ESR, CRP, a chest CT to look for lung involvement, and a UA to check for renal involvement. A search of some of the reputable medical sites should help you, e.g. Johns Hopkins, Cleveland Clinic, Vasculitis Foundation....

[Pete]

ESR (sed rate) and CRP (c-reactive protein) are non-specific markers of inflammation. Elevated levels can mean different things, but they are standard tests in helping to diagnose and monitor GPA disease activity. Frankly I would be surprised if you have not had these tests, especially if you have been worked up for GPA by a rheumatologist. Others can chime in if their experience was different, but I think the initial standard workup when GPA is being considered is blood testing for ANCA, ESR, CRP, a chest CT to look for lung involvement, and a UA to check for renal involvement. A search of some of the reputable medical sites should help you, e.g. Johns Hopkins, Cleveland Clinic, Vasculitis Foundation....

My doc's orders also include a CBC and a comprehensive metabolic panel.

[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. :confused1:

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.

[lovetoswim]

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.

Oh, i thought that was the way to tell if you had WG. FYI, I saw my ENT this week and he put a scope up my nose and said there were no granulomas in my sinuses and they were really clear. Can they tell that way?

[annekat]

Oh, i thought that was the way to tell if you had WG. FYI, I saw my ENT this week and he put a scope up my nose and said there were no granulomas in my sinuses and they were really clear. Can they tell that way?
Like Marta said, the most reliable indicator is a positive biopsy report. But it has to be from someplace in your body with enough Wegs activity that a good sample can be obtained. I don't know if the ENT can tell for sure visually that there are no granulomas in your sinuses. Nasal and sinus biopsies are notoriously unreliable, since it is often hard to get a good sample, though I was lucky and got my dx that way. For some people, a good strong ANCA reading says a lot, but biopsies are still done. For others, such as me and Marta, there is little or no ANCA reading, yet our symptoms point to WG and we get a biopsy, in addition to other tests like lung CT scans and the relevant blood work. Occasionally, an experienced doc is unable to get a good biopsy and will dx on symptoms and other tests alone, and begin treatment, and if it works, it is probably WG. You sound in great shape now, which doesn't rule out smoldering Wegs. I'd wait for your latest lab results and keep talking to the rheumy, asking her some of the same questions you asked here. She's a doc, and we aren't, though Marta knows more than I and is welcome to correct me on any point. Good luck.

Sent from my MotoE2(4G-LTE) using Tapatalk

[vdub]

The most reliable source of WG verification is a biopsy where granulomas are discovered.
And even then, it is not always conclusive, since there are different types of granulomas and wegs isn't the only disease that forms granulomas.

I have one very small granuloma in my lung and, of course, the big one that surrounded my pituitary gland, but, even at that, the docs, at least at Mayo, aren't absolutely certain that I have wegs. That, however, is in conflict with my local doctors 7 years ago and the U of Utah, Vasculitis Center, which gives you an indication of how difficult it is to make an absolute diagnosis.

Wegs is diagnosed by exclusion. When you have enough symptoms and everything else has been ruled out, then they might conclude you have wegs. Wegs doesn't have an absolute biological marker like some other AI's do, RA for instance.

From what I have gathered, most AI's, including wegs, are treated with pred and some type of immunosuppresant such as mtx or rtx. So, even if you have a misdiagnosis, you're likely to receive pretty decent treatment anyway.

[lovetoswim]

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.


Hi Anne, are you saying that most WG people don't feel better after a series of sinus infections, as I am feeling right now? From what I've read, it sounds like I could have "smoldering" WG that just hasn't reached the crisis stage that so many of you have experienced.

Believe me, this is not what I want to be dx'd with, but I am afraid to sit back and say, Ok, I don't have WG. I guess I should wait for the b/w results, even though it appears that the b/w isn't totally reliable.

[lovetoswim]

Oops, I see you answered my questions in a prior post, Anne. thanks.

[marta]

Hi Anne, are you saying that most WG people don't feel better after a series of sinus infections, as I am feeling right now? From what I've read, it sounds like I could have "smoldering" WG that just hasn't reached the crisis stage that so many of you have experienced.

Believe me, this is not what I want to be dx'd with, but I am afraid to sit back and say, Ok, I don't have WG. I guess I should wait for the b/w results, even though it appears that the b/w isn't totally reliable.


IMHO, I think the absolute best thing to do if you're feeling right now, is to not give this any more energy and carry on with life as if none of this is an issue. I think it's just as unhealthy to stew over the disease if there is nothing to worry about as it is to ignore it if there is something wrong with how you feel. I say just go with it for now, take that diagnosis of no WG as a blessing, and move on. If any crap ever comes up again, then you know where to look first for answers. You can go and see if it is WG flaring and instantly address the problem or eliminate the possibility, but in the meantime I say live your happy, symptom free life and thoroughly enjoy the feeling-right-phase-of-life. Having hung out on this forum, if nothing else, is a good place to gain some perspective and help with appreciating the days when you feel well.

Best of luck and may you never think of WG again.

[vdub]

Totally agree with Marta! If you are feeling well, then take it and run. Don't look back. Don't expend any more energy worrying about what might be.

[marta]

If you are feeling well, then take it and run. Don't look back. Don't expend any more energy worrying about what might be.

That's so eloquently and succinctly put and I think is a great quote to live by, whether you have WG or not.

We need to follow this advice when we have islands of feeling good in a sea of feeling bad.
Use those moments to appreciate, live and enjoy every available second while feeling good: Not in the past (regret, sadness, anger, frustration,) not in the future (anxiety, fear, worry) but right at that moment (joy, acceptance, strength, spark of life, etc.) when you're feeling well.

I think those are the healing moments for whatever ails a person, WG or otherwise.