So frustruated- negative biospy

[mich911]

Well, just received news that my nasal biospy was benign. Non specific to Wegeners. The last piece of the puzzle doesn't fit. I have a positive c-anca, sed rate is sky high, rheumatory fator and I have an antibody present in my blood that incidates an active vasculitis and I have a saddle nose deformity. So I have my appt with Dr. Antoine Sreih at the University of PENN on June 17 and all my bloodwork is being sent to him along with my biospy results. I hope he can help me and maybe I can get my appt bumped up after he looks at everything. Has anyone ever experienced a negative biospy and still had WG or maybe it could be something else? Another vasculitis?

Thanks,
Michelle

[Dirty Don]

A nasal biopsy isn't the most accurate...a lung biopsy is. I'm sure you don't want to go there. Many are dxed w/o a positive biopsy as the 'other' conditions are enough for a doc to make that decision. Altho it seems there have been many docs who really don't know WG well enough and are following the books rather than getting consultations from experienced docs. Thus they get dxes like yours...not being sure is not to your benefit of course as it prolongs the dx you need & the protocols you need. Hang in there, you'll, actually the docs, will get it right.

[Alias]

Michelle, a negative nasal biospy is more common than otherwise. The pathology report for my nasal biopsy says, astutely, that "... it is not unusual... to be non-diagnostic for Wegener's..." even though I had all the other criteria, as you seem to have as well. I got the sense that the pathologist wondered why the surgeon had bothered to do it. I cannot find the link, but there is a Vasculitis Foundation seminar on YouTube in which an ENT says they just "don't" do nasal biopsies anymore, due to the high likelihood of a false negative and the risk of an unnecessary complication. Obviously, physicians differ on this point, since so many still seem to think it's important to do. My personal opinion is that doctors often order procedures without a lot of thought. Short answer Michelle, your negative biopsy is just non-diagnostic; it definitely does not rule out GPA.

[mich911]

Thanks guys for the advice!! I was also wondering why they did the nasal biospy. I did actually question my local Rheumatologist and he insisted on the biospy. As of current I'm not having any lung or kidney symptom so my nasal tissue is the only thing they can use. With all my other test results and physical saddle nose deformity, I'm hoping that will be enough. The specialist at UPENN is an expert in vasculitis & Wegeners so I'm banking on this guy to help me.

[Alysia]

I had 2 false negative nose biopsies.
And I have wg.

[annekat]

Well, just received news that my nasal biospy was benign. Non specific to Wegeners. The last piece of the puzzle doesn't fit. I have a positive c-anca, sed rate is sky high, rheumatory fator and I have an antibody present in my blood that incidates an active vasculitis and I have a saddle nose deformity. So I have my appt with Dr. Antoine Sreih at the University of PENN on June 17 and all my bloodwork is being sent to him along with my biospy results. I hope he can help me and maybe I can get my appt bumped up after he looks at everything. Has anyone ever experienced a negative biospy and still had WG or maybe it could be something else? Another vasculitis?
m
Thanks,
Michelle What everyone says is right, but I was lucky enough to get a positive result on my nasal biopsy. So I think they are worth doing, especially if that is your only obvious area of involvement. If mine had been negative, they could have done a lung biopsy, which is a much bigger deal, and I'm glad to have been spared that. Of course, I had a saddle nose, too, so they could have just concluded by that and my other symptoms, plus the result of my lung CT scan, that I had WG. But I was not being seen by any real WG specialists; when you go to Penn, the one you will see will probably be able to come to that conclusion. Not that I want you to ohave WG, but if you do, I'd like you to know and be able to get treated ASAP. I'm sorry you have to wait until June 17th. It would be nice if someone could at least prescribe you some prednisone in the meantime. Best of luck!

[blu4runner]

I am a patient at UPenn and I see Dr Merkel but I have met Dr. Antoine Sreih and he is an excellent doctor as well and he works very close with my doctor. Best of luck in your diagnosis and treatment

[MaxD]

Michelle,

When I had similar blood test results, ear infections and joint pains, and no saddle nose deformities, my rheumatologists determined there was more than enough evidence for a diagnosis. They both ruled out the need for a biopsy. I did not notice any problems with my lungs - but, as it turned out I did have nodules. That CT scan decided it for my doc and she put me on high dose prednisone.

Glad you have an appointment at Penn - wish they would have seen you sooner. Is there any chance you can get your doc to call Dr Srieh sooner for a consult? Good luck!

[mich911]

Hi blu4runner,

Good to hear that Dr. Sreih is a great doctor and that he works closely with Dr. Merkel because he the ultimate expert in WG. I need all the help I can get to feel better.

[blu4runner]

When you go make sure to mention the clinical trials they do. I was able to get my rituximab infusions FREE for 2 years being in a medical trail. I go back on May 24 for my next visit

[mich911]

What everyone says is right, but I was lucky enough to get a positive result on my nasal biopsy. So I think they are worth doing, especially if that is your only obvious area of involvement. If mine had been negative, they could have done a lung biopsy, which is a much bigger deal, and I'm glad to have been spared that. Of course, I had a saddle nose, too, so they could have just concluded by that and my other symptoms, plus the result of my lung CT scan, that I had WG. But I was not being seen by any real WG specialists; when you go to Penn, the one you will see will probably be able to come to that conclusion. Not that I want you to ohave WG, but if you do, I'd like you to know and be able to get treated ASAP. I'm sorry you have to wait until June 17th. It would be nice if someone could at least prescribe you some prednisone in the meantime. Best of luck!


Hi Anne, I really praying that they can diagnose me without the biospy. June 17 seems so far away and I'm concerned with this recent symptom of numbness in my right foot/ankle. Been numb for a week and to me anything numb on your body probably isn't good. All of my bloodwork has been sent to Dr. Sreih so maybe he will review it soon and call me in earlier. I have been on 10mg of prednisone since April 12 and that has help so much with the leg & joint pains.

[mich911]

When you go make sure to mention the clinical trials they do. I was able to get my rituximab infusions FREE for 2 years being in a medical trail. I go back on May 24 for my next visit

Thanks for the advice! I'm so nervous about the treatment plan. I know these medicines are hard on the body and it scares me that I will be really sick on them. But I know I need to get treatment for this.

[annekat]

I think it is very likely, with the caliber of docs you will be seeing at Penn, that they will be able to give you a dx without the positive biopsy. And don't be too nervous about the treatments. For most of us it has been worth putting up with a little discomfort in order to stop our disease progress, get relief from disease symptoms, and avoid the permanent damage that would be caused by not being treated. I'm looking forward to hearing how it goes at Penn. Another thing people have mentioned is that sometimes you can get seen earlier if you call in often and ask if there've been any cancellations. Good luck!

[mich911]

I think it is very likely, with the caliber of docs you will be seeing at Penn, that they will be able to give you a dx without the positive biopsy. And don't be too nervous about the treatments. For most of us it has been worth putting up with a little discomfort in order to stop our disease progress, get relief from disease symptoms, and avoid the permanent damage that would be caused by not being treated. I'm looking forward to hearing how it goes at Penn. Another thing people have mentioned is that sometimes you can get seen earlier if you call in often and ask if there've been any cancellations. Good luck!



You are so right!! I need to get effective treatment to stop the progression of this disease. It's the only way. Also, good advice about calling in to see if there are any cancellations. The problem I'm experiencing is when I call I can only get to a central scheduler. Should I just keep calling there or is there another way to get around the scheduler? I'm not actually able to get to a nurse or the doctors reception. I'm sure I'm not the only one going through this. LOL:rolleyes1:

[annekat]

You are so right!! I need to get effective treatment to stop the progression of this disease. It's the only way. Also, good advice about calling in to see if there are any cancellations. The problem I'm experiencing is when I call I can only get to a central scheduler. Should I just keep calling there or is there another way to get around the scheduler? I'm not actually able to get to a nurse or the doctors reception. I'm sure I'm not the only one going through this. LOL:rolleyes1: I would guess you should just keep calling the central scheduler. If he or she is not receptive to being asked about cancellations, then I guess that's the way it is. I have never actually tried doing this. If you are in really dire shape at some point, I don't know how you'd get that known by the docs except by telling the scheduler. Of course, if things get really bad, you should go to the ER, which would get your current doc's attention and maybe he could talk to the future doc about a consultation or stepping up your appointment. I wish these systems were easier to navigate for someone in real need. Maybe someone else will have some ideas here.

[Pete]

Hey Mich,

You might go to the Vasculitis Foundation website to see if they have a different number for the doc.