Thank you so much for the information Phil! Wow! 7 bronchoscopies! They kept me awake for the first, tried to for the second but my heart was racing so much they finally sedated me. HaHa! That...
Type: Posts; User: Shannon
Thank you so much for the information Phil! Wow! 7 bronchoscopies! They kept me awake for the first, tried to for the second but my heart was racing so much they finally sedated me. HaHa! That...
I put my foot down this year and did not get the flu shot. After reading your post I am very happy that I did not. I got a typical head-cold, but living in a cold-weather state that is to be...
I met with my pulmonologist today because for about nine months I've had an increasingly difficult time coughing out congestion and it seems like it is getting thicker and thicker, and at one point...
I just emailed Dr. Carol Langford at the Cleveland Clinic about making an appointment to have them either take over or co-manage my Wegener's with my current doctor. I really feel good about this...
Thank you for the name at CC. I'm going to call about making an appt. I think you're correct that my pulmonologist's clinic doesn't see the kind of WG volume that CC does. After reading about Dr....
Thank you all. It has been great talking with you about this rather than just sitting here trying to figure it out myself. I do take Mucinex everyday, which helps a lot with the congestion. I too...
What is RTX?
I have a pulmonologist who knows a lot about Wegs but I don't think he is considered a Wegs specialist. He was actually talking about transferring my care to a Rheumatologist on my last visit and I...
Hi Phil,
I'm sorry to hear about flare and all of the medicine you have to take. It can be so scary when the WG rears its ugly head and reminds us it's always there lurking in the background. I...
Welcome Chris,
I was diagnosed in 2005 and went for a nine-month period drug-free. I've learned in the 7 years since I was diagnosed that taking a little medication each day/week keeps me more...
My pulmonologist always has me hold my MTX for a week if I get sick. He said that alone should give me the boost I need to fight it off without causing too much chance for a flare.
Hi Victoria,
Reading your story sounded so much like what I, and I suspect many WG patients, go through. My nose was flat, I was sick constantly, losing weight, and when I coughed up blood the...
Thanks so much for your quick reply. I don't see a rheumatologist, I see a pulmonologist but at my six month checkup on May 4 I will definitely bring it up to him. With the 20 mg. of MTX on board...
I have been searching the site trying to find out about the foot pain I have been having. Since my diagnosis no one has ever linked my extreme foot pain to my WG. The pain is centered, on both...
My urine tests have been +2 leukocytes for over two years and no one seems to worried about it. I see some great specialists so I'm not pushing it because the other kidney function tests are all...
I am so sorry that I missed this. If you know of anyone that has CD's of these sessions for purchase I would very much be interested in purchasing them. I have wanted to attend this symposium but...
Hi Cindy,
Welcome! I'm sorry to hear about your diagnosis. It can be frustrating for doctors because they know based on what they are seeing and hearing that they are dealing with WG or GPA as...
OMG! Prednisone, no one should be held accountable for anything while on this drug. :) Did you get the full menu of side-effects? The docs spoon fed me the info on side-effects and something new...
Hi Mama,
With the ear cartilage I had stitches behind my ear and a large bandage around my ear as well as on nose. It was difficult sleeping on my side as well. With the rib/sternum cartiladge I...
For the past five year my Wegener's has not affected my kidneys, mostly my lungs and sinuses. I just went back to my family doctor today and was diagnosed with my 4th bladder infection in as many...
I have been on a 15 mg. maintenance dose of MTX for about two years now with Folic Acid and Bactim DS 3x a week. It seems to be working well for but I have decided to find out just how long my...
Oh my goodness I had no idea that WG could do this. My right eye is affected but with scleritis and occasional swelling. I am so glad that they were able to correct this for you. You must have...
My saddlenose happened so gradually that I don't remember a specific incident. I just started noticing more and more that my nose looked different. I hadn't been diagnosed with WG but was...
Hi Dirty Don,
I am also new to this forum! After reading your posts I wanted to say hello. I have had WG for almost six years now and it also attacked my sinuses and lungs fairly hard but has...
I hope it's just the flu and you are feeling better next week. The symptoms of a flare mimic so many other things it always so hard to tell, which is very frustrating about WG. Pamper yourself a...