When in Doubt Kiss your Dog

[Pierrette]

Hi Jan, sorry my reply has been so long. Work has been tough and I caught a cold. I have been in the physical dumps. Gee, I hope your surgery goes well. I hope it is not to invasive and you will have a quick recovery and results. How can you be misdiagnosed when even my dogs get blood tests? I don't understand this. Does the ANCA show up each time? Or do the doctors not request the ANCA? What were you diagnosed with?

This crusting thing is annoying - I suppose it is quite gross to people, I guess anything coming out of your nose is freaky. For that matter, I could not even put contact lenses in my eyes nor think about sticking cocaine up there (which ran pretty rampant in Hollywood during the big eighties). Hey Stevie Nicks did so much coke that she created a hole next to her nostril which could be seen from the exterior. Every doctor I saw asked whether I did coke. My husband did not know about the crusting (and other weird things) until he went to the doctors with me and he accepted it without revulsion. But I am still worried about appearances (since I work at a law firm and need to continue to do so for a few more years). The ENT I saw around 2005 was in awe of the fact that my nose had not collapsed. I think that the collapse writing is on the wall.

I am looking forward to the Vasculitis seminar in the summer. Will you come to the seminar in Long Beach - or have you gone to one before?

Regards and thanks for your thoughts - Pierrette

[Pierrette]

[QUOTE=Sangye;11076]
What meds did you take? A giant hole in the sinuses indicates the Wegs was somewhat aggressive.

Why so much cranberry? Just wondering.

Hi Sangye,

I am only on Bactrim, and I take Allegra and Zantac for my hives. Cranberry is very high in antioxidants and is a natural support for urinary tract and anti-inflammatory. 2 of my health conscious crazy girlfriends told me to do so and instead of drinking all the juice - with all that sugar the cranberry pills are easy and not to expensive. Thanks for your message. Regards ~ P

[Pierrette]

Thank you Lightwarrior. Why Lightwarrior? I love fantasy books. Hey I am really with you on that "All of the strange seemingly unconnected events over the past couple of years all fit together now". . Thanks for the thoughts. Pierrette

[Pierrette]

Hi Sangye: Well I checked with my rheumy guy about taking the pred before taking it and he said okay, I think because of the asthma. I see my rheumy guy every month, but my anca registered normal and so I have gone 2 months. I will take a blood test this week and see the rheumy guy in 2 weeks.

Why do you think it is Weggie dangerous to take the pred for a short time? I do have an appointment to interview/consult with an ENT surgeon whose nurse said he is treating Weggies. I will keep searching until I find the right one. I hope I will be able to find Southern California specialist recommendations at the Vasculitis Foundation seminar this summer. Are you coming to the seminar?

[elephant]

Pierrette, you need to find a WG specialist soon. The crusting is a sign of active Wegeners disease. Being on Bactrim and Zantac are not going to suppress the wegeners disease or put you in remission. When the wegeners is active they usually start with Prednisone and other drugs to suppress the immune system ( cellcept, imuran, methotrexate...ect). I know I am being a nag. Just want to make sure that your body is not being damaged silently...that is what Wegeners does to your body. When were you diagnosed with asthma? The hives could be a sign of active wegeners, that is what I had too.

[Sangye]

I'm not coming to the symposium but I'm really glad you are. I wouldn't wait until then to find a Wegs doc. Call the VF. I might have said that already...

Please be careful taking excessive amounts of cranberry. They're high in oxalates, which cause kidney stones. With supplements and herbs, more is not better. Reasonable amounts are all you need.

[JanW]

Pierrette: I agree with everyone that you need to find an ENT who deals with Weggies on a regular basis. That person will have done the saddle nose deformity surgery as well, I'd bet. Saddle nose is an uncommon but classic presentation of WG, so I'm not surprised at all that even in a place like LA it wouldn't be easy to find someone who has done tons of these surgeries. I think my surgeon has done 200 over a 20+ year career and that is considered a lot. But because saddle noses occur from other things (most prominently cocaine abuse and trauma), you will have a lot of plastic guys who have done them. HOWEVER, we weggies have special concerns as far as our immune systems go and the possibility that our bodies could again attack the cartilage, etc., so you need someone with experience with the disease as well as reconstruction/aesthetic part of things. I have not gone into the surgery a great deal with my ENT, because right now I am concentrated on the subglottic stenosis surgery, but I will get more details after.

Getting the crusting is definitely a sign of active WG. And I also tell people to worry about 'asthma.' I was misdiagnosed with asthma/allergies by several docs for over five years when it was subglottic stenosis (and all of the throat clearing that goes along with it). The nasal irritation and occasional eye watering were part of it too. I was on pred many times for my 'asthma' and it ended up weakening my bones much more than they should be for a 44 year old woman, so please be careful! I never had an ANCA test until last month -- I'd never been to a rheumotologist before and would not have been that time had I not had a persistent problem with my ankle that caused a podiatrist to a routine inflammatory panel. Guess what? SED rate, RF and CR-P all way high. Not to mention that my nose had collasped (which I noticed, but hadn't really dealt with. I made an appointment with an ENT but had to cancel because of snow -- I couldn't get out with my bad ankle). I saw the rheumo on a Wednesday, the ENT on Friday. When I saw the ENT he told me I would need surgery on my airway within a couple of months (basically wouldn't let me leave the office until I understood the gravity of the situation) and by the following Monday the rheumo called me with the results of my ANCA and P3.

[Lightwarrior]

Years ago when the ICU I was working in as a Charge Nurse started to turn really negative I brainstormed with some of my "star" nurses and came up with a solution. It was "cool" to badmouth other shifts, other floors, each other but i had been unable to make it "cool" to praise. So I made a rubber stamp with a little picture of a guerilla and the words, Thanks for making a difference you've been hit by a guierilla lightwarrior. The rules for my small band, were 1. it had to be anymous, 2. The event could be a positive clinical issue or someone caught be nice but it had to be real not just fluff. We cut up index cards and stamped them then we would leave something, anything ( a flower, a candybar etc.) with the card attached on the persons locker. Because no one knew where it was coming from, soon instead of people always thinking that everyone else was looking for bad things they started looking for good things. I noticed that some of our cards were being re-cycled and not even I knew who it was. It didn't change all the negative folks but it isolated them so the ones who wanted to br postive had permission.

long story short, I love the idea, the concept of being a lightwarrior, spreading light into the darkness, yada yada :-)

[JanW]

And now I know where Dominic gets it from. Very cool indeed, Lightwarrior -- you're a real leader.

[Sangye]

This is the world I want to live in. Great idea to make it anonymous like that. Bravo, Lightwarrior!