New to WG and scared to death...help

[LisaMarie]

Hello everyone...I have just been given the diagnosis of WG.....I started a year ago with upper resp issues and it was chalked up to my hx of asthma...after several misdiagnosis a bronchoscopy was done in December 2009 and I had sub glot trach stenosis.....found and expert at KU Med to repair it..I was 80-90% occluded by the time he go in there in Feb 2010....we did laser with erythromycin and balloon dialtion...at that time no eitology was known...a month out I was healing slowly and 25% occluded...then all went crazy...I got a repir cold I cold not shake and by the time I got in to see the specialist I was already 50% occluded...and WG was noted ...It also effects my right pariod gland cause the right side of my face to swell...I am seeing an RA specialist and he started me on pred 20 mg daily and methotrexate 10 mg q week til we can get the rituxan approved....i am a whimp when it comes to meds...I am throwing up the 1st 24-48 after taking the methotrexate...so not sure what they rituxan will do...They started me on low doses to see how I handle it...They wanted to start me on 60 mg of pred daily...I am wanting to know if anyone has the same sites I have...my doctor tells me that where mh WG has chosen to settle can be hard to treat and is rare....I have 4 children under the age of 15 and hate feeling like crap all the time and too exhaust to do activities with them....Does it get better?...I use all my energy to go to work...I guess I am just fustrated...sorry and info on this disease would be greatly appreciated
Thanks
Have a great weekend

[Jack]

Hi LisaMarie and welcome to the site. So sorry that you had to come and find us!

First thing I will say is that "scared!" is a perfectly normal reaction to contracting Wegs. It is a rare disease so you will know little about it and that is scary, but as you get to know the disease better you may become more at ease with it. We can help you there!

You need to be treated by a vasculitis specialist with experience of Wegener's. It is a tricky disease that does not follow any rule book and requires first hand experience from your doctors. Let us know where you are (perhaps include it in your profile) and someone will be along to help you to locate one. The treatment you are receiving is not unusual, but there are alternatives that may be more effective and suit you better.

There are no typical symptoms for Wegener's and everyone on the forum has a different story to tell. However, there are a couple of very dangerous ones involving lungs and kidney function that must be tested for. That is where your specialist comes in.

I'm sure lots of other members will be along with more comments, but in the meantime feel free to ask any questions and vent any feelings of anger or fear. We all do from time to time!

[JanW]

Hi, Lisa Marie - Sorry you had to find us.

I was diagnosed in January 2010 based on my subglottic/tracheal stenosis and my saddle nose, plus positive C-ANCA and P3. I had surgical repair of the stenosis in March with a balloon dilation as well and I was still 100 percent open six weeks ago (go for another check up this Friday). My doctor is Robert Lebovics in NYC and his number is 212.262.4444. I would suggest that anyone in the US call his offices for advice on this. He is one of only three docs in the world (sorry, don't know who the other two are) who do this surgery in his particular way, and he learned it at NIH while working Hoffman and Langford, who people here will tell you are two of the top WG experts in the country (I believe they are both at Cleveland Clinic now). Anyway, NIH pioneered a lot of things in the US in regards to WG. I'm a little concerned that it doesn't seem like you were also coated with chemo drugs (usually myomicin is used) as well as steroids in addition to antibiotics (which is what you had) at your surgical site. It is believed that the chemo may retard regrowth, and it has been proven that steroids reduce swelling. I"m also a little concerned about the lasers, as many docs do not do this any more because of the risk of additional scarring (my surgery was just with microscissors).

Your doc is right that the subglottis is a rare site (about 15 percent of WG patients) but WG is just about the most common cause for stenosis so docs usually think of that right away -- in fact that finding came back when I had a CT of my throat just because of the narrowing (it said: "WG should be explored"). Do you also have issues with your nose saddling (that is, the bridge collasping), because those two things often occur in the same patients. I have both and was also misdiagnosed with asthma for five years.

I'm sorry I can't be any help on the meds. I'm on no pred but 15 mg of mtx, and have no side effects at all.

[LisaMarie]

thanks I see Dr Garnette at Ku for my stenosis and Dr huston at at likes for my WG he is part of Dr Abdo group .My stenosis repair was with a cutting of the tissue into 4 like a pie then emycin injected then balloon dilated. My labs r negative at this time for WG so i was delaided in a diagnosis but fron my little k.owledge don't have to hv
ave positive labs

[JanW]

If your rheumy is part of Abdou's group, is he consulting directly with Abdou, because that doc is on the list of medical consultants on the Vasculitis Foundation's website (a very important resource: Front Page | Vasculitis Foundation). I see that Garnett wrote a paper about SS surgery that's up on emedicine, so he's considered some kind of expert in treating that condition, though not necessarily in patients with WG. Cutting into four like a pie sounds like my surgery, but it wasn't done with lasers -- I'm not clear why yours closed back up so quickly either.

[LisaMarie]

i guess it is because I was not treated for wegener's...garnett only treated the symptom not the disease....was told without remission i have a poor prognosis so i am hoping for remission....it is really scary to read any info on the internet

[pberggren1]

I'm glad to hear that you are in good hands LisaMarie!

[LisaMarie]

so does anyone also have a parotid gland and lower jaw gland affected too...my gland by my ear and under my jaw swell and r painful...it feels like my lower jaw bone is deformed

[pberggren1]

I have had some damage to my saliva glands due to Wegs because I have decreased saliva production. But which ones I don't know. I know that the parotid gland is the largest saliva gland.

I have some pain in my jaw, teeth, and ears sometimes but I am sure it is related to what is going on in my sinuses.

[Jack]

Random symptoms seem to be quite common with Wegener's and many of them are not documented. Certainly there are lots of problems on the forum with ear and eye plumbing so problems with saliva glands would be no great surprise. As with most Wegener's symptoms, there may be attempts from doctors to treat the symptoms that they see rather than the underlying condition. If it is the cause, you should find that things improve when they get the Wegener's under control, which they will!