fairly new member

[peachyhugsgina]

My name is Gina , and I am 56 yrs old. I recently moved and changed rheumatologists as a result. My new rheumatologist , of course, drew her own labs for her own evaluation of my signs and symptoms. I have been diagnosed with sle or lupus, and fibromyalgia. The lupus is in a major flare, and the fibro is also flaring. What brought me to this sight is that one of the blood tests she drew was an antiproteinase 3 blood level, and it was elevated at almost 6.. I think the actual number was 5. 9 .. At this time, she cant confirm Wegeners but says she is watching me for more development of this disease.. which I have very little information about, and haven't been able to find much written on this disease.
I recently had a very severe upper respiratory infection that involved my sinsuses, ears, throat, and bronchial infection in my lungs.. asthmatic bronchitis according to the pcp. However, the rheumatologist is wondering if my being on the methotrexate injections and moving my dosage upward each week for the 4 weeks prior to my becoming sick is an indication of Wegeners, or a reaction to the mtx. She is talking about changing the mtx to cytotoxan if I become sick again within the current month.
My symptoms of Wegeners are the antiproteinase 3 test being elevated
recurrent bronchitis
recurrent sinusitis
fatigue
joint pains
itchiness
night sweats
occasional low grade fever
recurrent nasal ulcers

I would appreciate any feedback that anyone feels free to give.
Thanks
Take care
Peachy hugs,
Gina

[Jack]

Hi Gina,
It certainly sounds like Wegener's, but the most defining test is biopsies taken from the affected areas - nose, lungs etc.
You really need to get a definite diagnosis as quickly as you can because Wegener's can cause you big problems if not treated correctly (like killing you). Make sure they keep an eye on your renal function, failure has few symptoms until it is too late. I speak from experience!

[peachyhugsgina]

Jack,
Thanks.. I may have to find a wegs specialist.. I am in Georgia, and will drive wherever I need to go .. probably Mayo in Jacksonville is closest to me..
Take care [
Gina

[elephant]

Hi Peachyhugsgina, I live in South Carolina and drive to Cleveland, Ohio and go to the Cleveland Clinic to see a Wegeners specialist ( Rheumatologist). Your symptoms sound like Wegener's Disease. I would go to the Vasculitis Foundation web site and look up a Wegeners specialist... really it will save your life and being misdiagnosed and taking the wrong meds....been there done that multiple of times....very long story.
Please, I know it sounds overwhelming to go to a Wegeners specialist especially far away...going once will make a world of difference and you won't be wondering....
I truly wish you the best and welcome.

[Sangye]

Hi Gina,
Welcome to the group! Thank you for listing your symptoms so clearly--easy to follow! I agree with Jack and Elephant. Please find a Wegs specialist asap since your symptoms are highly suggestive of Wegs. I'm glad to hear you're willing to travel for proper diagnosis, etc.... I go to JHU in Baltimore.

It can take weeks to get in to a major center, so I suggest you get on it first thing Monday morning.

[Dumpy]

Hello Gina,
Everyone here will be pulling for you. I don't know which side of Atlanta you live on but there is a very good Wegs specialists in Birmingham, Ala. at UAB. The doctors name there that is head of the Wegs research team is Dr. Barri Fessler,she is very good. I went to see her the first of Oct. last year and it was well worth the trip and I think it is only about 2 1/2 hours away depending exactly where you live. If you decide to go there let me know and I will get the phone number for you.

[JanW]

Hi Gina: like Gina said, there are wegs specialists at University of Alabama Birmingham -- it in fact was one of the place that the ran clinical trials for rituximab for WG -- which is now being used with some success and docs seem very excited about. I agree with the others that you should have your kidney function looked at and of course complete CBC and Chem panels which she will need to know to start you on any drugs. I don't know much about the overlaps between fibro and SLE and WG however in terms of symptoms -- maybe others can be more helpful. Others are right, the biopsy is gold standard, unfortunately nasal and throat biopsies frequently fail in that they can't get enough tissue. My doc explained to me that my case was clear enough (I have a saddle nose and subglottic stenosis two rare, but textbook, symptoms) and I had positive anca and elevated P3, to put aside a biopsy for now (they will try to biopsy the material they take off my stenosis, but the ENT has his doubts that will be successful.

[Doug]

Gina ~ I'm with the others: it sounds like WG, but needs to be confired with nasal and lung biopsies, perhaps a kidney biopsy if you show evidence of kidney involvement, too. (This is the "severe" form of WG, though the form without kidney involvement isn't necessarily any less difficult to deal with!) Welcome to the forum! http://vasculitisfoundation.org/ This link will take you to reliable information on Wegener's granulomatosis, but I recommend you also familiarize yourself with the nature of the tests ordered for you so you can better understand the course of your treatment and keep up with "doctor talk" when you go in for evaluations or appointments where your doctor is reviewing your latest tests.

[peachyhugsgina]

Hi Dumpy,
Dr Fessler sounds like she is the closest Wegs specialist to me at UAB. I am 30 miles southwest of downtown Atlanta.. so probably no more than a 3 hour trip one way. I would like the number and address for Dr Barri Fessler. Thanks for letting me know.. because the next closest place to me is Jacksonville , Fla.. Mayo clinic.
Take care
Peachy hugs,
Gina

[Sangye]

Sweet! That means I can cross your name off my "Must Nag to Get a Wegs Specialist" list.