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Pierrette
02-16-2010, 04:58 PM
Hello, my name is Pierrette,
I live in Tujunga, California USA (west of the Rose Bowl at the end of the San Gabriel Mountains) with my husband of 30 years and two brown labs. I am 55, tall, large, goofy with a creative streak and a loud laugh. For 19 years I had a terrible stressful thankless job- a commercial high liability escrow officer - and then I walked away from it one day in 1994 and surfaced at a large law firm as a paralegal. I work with type A driven smart successful men. I deal with everything from property tax appeals to estate tax returns and trust allocations upon death. My boss, a kind and careful man, still steps over the line with my stress level. Remarks made in this forum about - how can you be so ill and look so good - directly resound with me. It is hard to halt the billing machine. It is hard to put on the cruise control.
My mother, my worst moment, telling my mother I was diagnosed and explaining it to her, my beautiful saintly mother still repeats - but dear, you look so good. What irony. I look really good and I am sick. Raspberry noise.
Back track 2007 I ease my aunt - passing from terminal cancer. Now it is 2008 I am past my menopause and way too overweight. That is it. Enough already. I commit to my weight loss and I lose 50 pounds in 6 months (eating weight watchers plan), 2009 I lose 10 pounds. I can't walk the weight off - bone spurs. I hate the weight room so I start swimming slowly laps laps laps on my back - then up to 1500 to 2000 meters every other day. Hey I am doing really good except these hives keep bugging me. So I find a allergy specialist and do every test and no allergy. Gee wiz I was really worried about the prick on my back (dog allergy). Off to Hawaii - Kaanapali Beach, I am in paradise, lying around and I have dreadful fatigue. I sail through the liver and other tests, then flunked the anca. Off to an internal medicine man ct scans and x-rays showed an enormous hole in the sinus cavity and I started crusting, slight bleeding in my nose and inflammation under left eye (my eyes tend to tear in the morning) October 2009 bad news Weg diagnosis.
October 2009 I was scared to death - websites are very very scary. Ugh 2 days of crying. Ugh. I found a lady to talk to in Solvang, another in San Diego, they told me their stories and I slowly came to terms. Then I felt guilty that I was doing so good and was so lucky to have the diagnosis so early. By talking to other patients and reading through this forum it seems that I am in pretty good shape. I am only on Bactrim, antihistamines and I take large amounts of cranberry pills. My anca titer is no longer positive as of last test- my sed rate is pretty good too. No nodules in my lungs and no kidney involvement - yet.
Here is my term sheet: One day at a time. Try to think positive thoughts. Continue swimming and working out in the pool - eat less and walk around hungry (like my dogs). Leave work when I am tired. My nose will certainly collapse and my life will go on. I will have good days and bad days and I will be and I am grateful for each day I see my husband, my friends and every sunset over the San Fernando Valley and every time I toss a ball to and kiss my dogs.
I almost died in a car accident in 1996. My life outlook changed, I slowly recovered from the medical and mental effects of the accident. Now, in the last 5 months, I am back to searching for the correct blend of work, life and love (time for me and time for everyone else). The search is never ending I don't think I will ever have the answer. But I am grateful for this forum and knowing there is a place I can locate other people - that I am not unique. God bless you all.

Jack
02-16-2010, 07:41 PM
Hi Pierrette :)
Although I'm sure it does not feel like it to you, you are one of the lucky ones having only limited involvement and an early diagnosis. You must take advantage of this position to make sure thing don't deteriorate. At the first sign of any new or worsening symptoms, you need to get immediate treatment to stop it in its tracks. As I'm sure you know, this is a sneaky disease and if you don't look for the signs it can be causing serious damage without you even knowing. In my own case, I went from sinus trouble to kidney failure and organ shut down in two weeks in spite of being confined to hospital.
If you don't already have one, you need a specialist who knows Wegener's inside and out. He will probably be a rheumatologist, but there are others. The correct treatment of Wegener's is not something that can be picked up from medical books!
Best wishes.
Jack.

elephant
02-16-2010, 11:06 PM
Welcome Pierrette! That is great that you are just on Bactrim. You sound like a very positive person. I agree, it is a battle to find the right balance but you do the best you can. Did they put you on prednisone when you were first diagnosed?

JanW
02-17-2010, 12:50 AM
Welcome Pierrette! It's great that you are feeling good and so far has limited involvement. I have limited involvement with just my sinuses, throat and lungs being affected. Next month I am going to have surgery to open my windpipe back up, which has been scarred by this disease. I was misdiagnosed for many years (dating back to 2005), and only diagnosed in the middle of January. I wouldn't worry about your nose collasping. Although mine did, I really don't have much nasal inflammation or anything worse that cold symptoms going on inside my nose. I'm sure that most people here who have horrible crusting don't have the saddle nose. It's a relatively rare manifestation (around 20 percent) of WG and a few other AI diseases, and not necessarily reflective of the agressiveness of the disease (my disease doesn't seem to have progressed agressively since 2005 yet my nose collasped seemingly overnight during the summer. Plus, they can fix it, even if it does (that will be next for me, down the road).

Sangye
02-17-2010, 01:39 AM
Hi Pierrette,
We're glad you found this group, too! Feeling alone in the world can be one of the hardest things when you have Wegs. (I went 2.5 yrs without knowing anyone!) Even with a great support group, you can still feel misunderstood in your daily life among friends, family and co-workers.

I second what Jack has said. Even though it sounds like you're doing okay now, please do find a Wegs specialist to oversee your care. We can help you find one.

What meds did you take? A giant hole in the sinuses indicates the Wegs was somewhat aggressive.

Why so much cranberry? Just wondering. :D

Lightwarrior
02-17-2010, 02:27 AM
Pierrette,
I am a new member to this group also and i have to say that it has gone a long way to keeping me sane. (Big leap, assuming i was sane to start with??) All of the strange seemingly unconnected events over the past couple of years all fit toghether now. The hardest thing for me to come to terms with was being unable to quantify and catagorize what was happening. I spend my life teaching smart nurses how to anticipate and prevent the next event. Wegs is sneaky and I am trying to embrace that it fits nicely into the chaos continuum. Your sense of humor is awesome and I look forward to your contributions to this wonderful forum.

jola57
02-17-2010, 07:07 PM
Hi Pierrette, glad you found us. You sound like you have a good outlook on life - good for you. The more humor the better. One thing, do find a good wegs doc and listen to your body.

Pierrette
03-01-2010, 11:48 AM
Thank you Jack, I like your hat. You are very generous with your information to everybody. I was lucky and stumbled upon a rheumy guy geograhpically close to me - a Dr. Noritake. Doctor No (very un-James Bond like) is a very careful and cautious doctor and I have been comfortable with our relationship, his care and reasons why some meds now and some meds later. I also was trying to locate a Weg doctor specialist and when I did searching Dr No's name up with papers publish in Am Med Journals on the subject. Okay so I have one doctor that is my main guy. Next, I still needed an ENT surgeon's opinion about what is going on in my face and the possible surgery for the saddle-nose. It is hard finding the right doctors in Los Angeles. Los Angeles is the land of plastic surgeons - many were recommended to me and none took insurance, some professed Wegeners past patients - but I didn't get the correct feeling. I spoke with a Weggie lady in San Diego who gave me the name of her ENT at Scripps (a respected hospital about 120 miles away). I spoke with this doctor and he gave me his buddy in Beverly Hills, a Dr. named Nicholas Schenck who works out of Cedars. (Cedars is a hospital on the west side - Michael Jackson, Liz Taylor etc.....) I was shaking my head when I researched Schenck - when you google him you come up with a profile in a Malibu magazine worthy of a Woody Allen movie character. But after talking to all these plastic surgeon's nurses and getting a feel for things then speaking with Dr. Schenck's nurse and his practise I have made an appointment for his assessment of the hole in my head. I have made a bit of progress. And hey, perhaps I can find something at the Vasculitis Foundation conference being held in Long Beach this summer. Thanks bunches Jack, its really comforting to know you are there. Regards ~ Pierrette

Pierrette
03-01-2010, 11:53 AM
Hi, South Carolina Elephant. Why Elephant? A Lucky totem perhaps?
"Did they put you on prednisone when you were first diagnosed?" No, um because I seemed strong. My overall condition seemed like I was getting over the flu some days and some days like a mild cold. But I had to take some 2 weeks ago. I caught this crudy cold/cough that is goping around and my asthma kicked in and the guy at urgent care gave me some. I have a small dose of the cough in the morning and the steriod knocked my hives into hiding. Perhaps for the first time in 3 years no hives for about 2 weeks, but they are creeping back on my stomach. Erg. - P

Sangye
03-01-2010, 12:07 PM
Pierrette,
It really looks like your Wegs is being totally mismanaged by people who don't have experience and/or aren't treating you on a regular basis. It's very dangerous to put someone on pred for a short time the way the ER doc did. You really need a Wegs doc prescribing pred when you have Wegs.

Also, please see an ENT who is highly specialized in treated Wegs, not just a plastic surgeon. Even a great plastic surgeon won't know how to address the concerns of a Weggie unless s/he has treated tons of them.

Pierrette
03-01-2010, 12:08 PM
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
03-01-2010, 12:14 PM
[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
03-01-2010, 12:18 PM
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
03-01-2010, 12:27 PM
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
03-01-2010, 12:46 PM
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
03-01-2010, 12:46 PM
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... :D

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
03-02-2010, 12:58 AM
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
03-02-2010, 04:13 AM
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
03-02-2010, 04:16 AM
And now I know where Dominic gets it from. Very cool indeed, Lightwarrior -- you're a real leader.

Sangye
03-02-2010, 06:40 AM
This is the world I want to live in. Great idea to make it anonymous like that. Bravo, Lightwarrior!