Test results

[LilyPony]

Sorry so long!

For whatever stupid reason the anca blood test came back "inconclusive" so don't have any results on that. Doc thinks it was just a lab error or they dropped the vial or something ridiculous like that. Other bloodwork came back looking like I was trying to fight off something. So, gave blood for that test to be repeated yesterday too. No blood or protein in urine.

My nostrils and sinuses look slightly irritated but not as he'd expect someone with sinus-involved wegs to look. My larynx looks 100% normal. Bronchoscope shows irritation but again, not wegs-like. Chest x-ray is clear. They plan to scope my espohagus soon, but I don't have the date yet.

He (the ENT) said he really thinks my wegs is limited to the lacrimal area of my one eye, just as I was first told. He thinks my shortness of breath is asthma even though it's a fairly new symptom and I've never had an asthma attack. He thinks the last several years of progressively worsening coughing is from two things. Allergies (severe, confirmed by skin testing) that are resistant to every allergy med on the planet. The other thing he thinks is I have LPRD which is a form of stomach reflux that causes chronic cough. I'm not sure I buy that diagnosis because 3 weeks of high dose prilosec hasn't changed anything, but I'm being a good sport and giving it more time to work. He blames my ear stuffiness and occasional pain on allergic inflammation. He is supposed to attempt to consult with a wegs specialist today (and get me in line for appointments) but said it might be a while before he gets any concrete answers.

I was given prednisone for the next 12 days (40 mg x 3, 30 mg x 3, 20 mg x3, 10 mg x3) because it would help if it was allergies, asthma, a mild wegs flare, or an inflammatory situation in my esophagus. I took it 3 hours ago and I feel AMAZING. Granted, I'm jittery and belly's growling despite having eaten a nice big breakfast. My weggie eye vision is nearly perfect, the stuffy ear is totally clear, and I feel like I'm breathing halfway better. It's frustrating because we know for a fact that it's wegs with my eye, which of course will improve by the prenisone. But then we still don't know what is causing my other symptoms and any of the possibilities are helped by the prednisone. He thinks that what my body does after I'm done with the prednisone will be a big clue to what is causing the problems. So, I'm still a big mystery, but hanging onto hope that it's just plain old allergies and/or stomach. The treatments for those are a lot easier to handle!

Anybody have any thoughts?

[Jack]

Sorry to sound a little negative, but the doc's response sounds all too familiar - you have lots of symptoms, but they are not being considered as part of the same problem just a series of unfortunate coincidences! Many of us have experienced the same reaction from the medical profession and I really don't know why they are so unwilling to put all the facts together and look at the entire picture.

[LilyPony]

Yes, Jack, that is why I ran this by y'all! I had a feeling that was what I was going to hear. The only thing that I'm really holding onto is I genuinely am so horribly allergic to everything. If my sinuses, trachea and larynx all look normal with no visible lesions or lumps, how would they differentiate my sinus and breathing symptoms from asthma/allergies? I think that's where the ENT is coming from - everything looks normal and clearly points to other causes. Prednisone would help with any outcome so not really indicative of anything in my opinion. How will the wegs doc be able to tell the difference?

[JanW]

Sorry. But I am sitting on Jack's bench on this one.

First thing to know is that adult-onset asthma is fairly unusual, and other conditions should be considered. I didn't know that, but everyone from my acupuncturist to my rheumo confirmed it. I too was diagnosed severe untreatable allergies and given weekly shots (I was still going nearly five years later) and my condition remaind unchanged. I was on several meds for asthma and my breathing got worse. I have inflammation in my nose but nothing that would make any ENT say "wow." My allergies were resistant to every med. I was then diagnosed with reflux (which I do have but still) and treating that did nothing for my breathing. I'm glad your broncho scope looks clear but I'm worried about the breathing. Did the doc confirm that you have an normal, adult sized windpipe as far as he could go (roughly 8-9 mm)? Taking the steroids and feeling great is no surprise -- I'm still cruising from my last dose at the hospital at 5 a.m. I think that your symptoms are related to WG -- my doc is treating a woman right now who has never had a positive ANCA -- this is not unheard of.

[LilyPony]

Thanks Jan - There was no mention of any narrowing of my windpipe so i assumed it was normal. He said it was pink borderline red, basically healthy but a little irritated. If it was diseased he said it would look blueish gray. I am feeling 100% better (literally) except it just feels a little hard to breathe. The air moves in and out but I feel it moving, aware of it on every breath, and I'm not able to ignore my breathing like a normal person would. Does that sound consistent with a narrowing of the windpipe? I never thought about the possibility of it being narrowed but when I think about it, that's almost what it feels like.

[Jack]

Diagnosis of Wegener's is mainly done by probability - the more symptoms and blood tests that indicate Wegener's, the higher that chance that you have it. The only result that gives a true positive is examination of a biopsy taken from affected tissue. However, a negative biopsy result does not rule out the disease, it may just be that the sample taken was not affected. If you have a whole collection of Wegener's related symptoms, it may be worthwhile beginning treatment just in case. It is a matter of weighing up the possible advantages against the disadvantages.

[LilyPony]

elephant - I had allergy testing last week and confirmed that despite 5+ years of allergy shots I am still extremely allergic to dust and those spring grasses that haven't bloomed yet. We've been going overboard with the dust mite prevention with weekly vacuuming of mattress and pillows, twice weekly washing of sheets in hot water with mite wash, got rid of all throw pillows and fabric furniture - all leather now. I feel the same and dont' notice a difference between seasons. I only notice a difference when I get a cold which takes forever to go away then I go back to my "normal".

I did find a new way "in" with a wegs specialist by suggestion of a friend who is a nurse at one of the hospitals. I need to use one of the GP's that work in the associated internal medicine clinic. They are easy enough to get appointments with and when you need to see a specialist you're already in the hospital system and no longer a new patient. All the docs there are on the same system with digital files. The GP will be able to get me in quickly. I think I will try this route. I almost suspect that the ENT will be too busy trying to disprove wegs rather than considering it even though he says things that make sense. I'd love to have it disproved but I also need it fully investigated by an expert. All of a sudden, I'm worrying that he will talk the rheum out of seeing me quickly because he has all the answers.

[JanW]

LilyPony: The rheumo will be the person to diagnose WGs -- the ENT will then act in a consultive capacity. It sounds to me as though you are right, and he doesn't want his diagnosis to be wrong. My pulmo went so far as to suggest I NOT see a rheumo despite high SED rate, RF and CRP numbers (had a rheumo screen through a podiatrist because I had foot problems), because these things were all indicative of my asthma/allergy profile. My "allergies" never got better either, even after five yeears of shots. And my allergist was one of "NYC's Top Docs" and is renowned throughout the city. People don't look for what they don't think they will see. The person who really suggested WG should be explored was a radiologist halfway across the world who never met me, but who suggested that my sinus and throat CT scans both "suggested that Wegener's Granulomatosis should be explored." My mistake was letting the real world docs talk me out of exploring it six months ago. Even the rheumo was a littl skeptical at first until he saw the scan reports -- and my nose.

That's one good thing about a saddle nose. No one is calling you a hypochrondriac once they see it.

[Sangye]

LilyPony, I'm with the others. Doing a few days of pred and then stopping will show NOTHING. If it's allergies, they'll be back. If it's Wegs, it'll be just as bad or worse. What a ridiculous proposal and waste of your time.

I seriously doubt that any of it is allergies. It sounds like Wegs that is obviously in your tear duct but is simmering in the other areas for the time being. Use your new "in" and bypass this guy. He doesn't know how fast Wegs can move, and it doesn't sound like he considers this urgent or important.

[jola57]

LilyPony, same here. The quicker you are diagnosed and proper treatment is started the better chance you have of arresting the disease so that it stays limitted for a long time. Get thee to a specialist

[jola57]

Sangye, I know you think rtx may be better, but my regimen of ctx and mtx seems to work so far. I think both my rheumy and I think that don't fix if aint broke. We are keeping a watch on my liver and kidney functions since all else seems to be fine.

[elephant]

Jolanta your on cytoxan and methotrexate? Are you still on low dose of Prednisone? I am wondering if triple therapy is beneficial since I am doing the same thing.

[JanW]

I think that it's not a matter of ctx being better or worse than rtx, but it is fact that the RAVE study proved that rtx was both safe and effective in the treatment of WG -- just as effective as the more toxic cytoxin. So that part isn't in dispute unless further studies conclude otherwise.

[Sangye]

I think that it's not a matter of ctx being better or worse than rtx, but it is fact that the RAVE study proved that rtx was both safe and effective in the treatment of WG -- just as effective as the more toxic cytoxin. So that part isn't in dispute unless further studies conclude otherwise.
Yeah, that's what I meant!

I just want you to be as healthy as you can and satisfied with your treatment. Whether that's with ctx or rtx, I don't care. :)

[jola57]

I was on both and 15 pred for 3 months, now i am on 10mg mtx and as of yesterday 7mg pred

[elephant]

Jolanta, Is the methotrexate 10 going to be the maintenance dose? How are you feeling?

[Sangye]

What's a typical maintenance dose of mtx?

[elephant]

I'm guessing the maintenance dose is whatever they can tolerate without flares.

[jola57]

For now 10mg of mtx seems to work as a maintenance drug with 7mg pred. I should get my new results next week so I will see how my kidneys and liver are doing.

[Col 23]

Frustrating..However its good that your feeling okay. Sounds like you may have to wait on the bloods again to tell the story.
Im new to all this but I think if your still having breathing difficulties you might need to go back again. I remember at the beginning I had difficulty breathing with Wegs and my chest was all tight and painful however that was because the nodules were on the lungs and chest. Its still gets tight and I get breathless every now and then especially when Im tired. Sorry I couldnt be more helpful.
Col 23