Kansas, USA Wegener's Gal

[Nancy]

Hello everybody -
My Name is Nancy I am 45 yrs old and have had Wegener's about 12 yrs... I have had on and off flqares with most easily resolved. I am currently continuing one that started in late Nov '09. I think it started after I took an H1N1 injection. Before this injection - my Wegener's was ALWAYS limited - pulmonary only. I now have sinus involvement with a few instances of hematuria. I have been on Cytoxan/Pred since Dec - seems to be improving with rare nasal bleeding - no coughing issues. I am having extreme exhaustion - to the point that I quit my job to rest... I am a Nurse Practitioner by trade (21yrs + nursing experience) and have never been this tired. I am also having some severe intermittent Myalgias in my upper arms/shoulders and neuropathies in both my little fingers. Otherwise doing really well overall for the potential possibilities... I am glad to have found this group and be able to learn from others. I do have a specialist for Wegener's who is a Rheumatologist in Kansas City - right now - he just told me I looked sick but said that the last ANCA was negative with a slight increased SED rate. Will test again in about 2 weeks... Good evening to everyone!!!

[jola57]

Hi Nancy and welcome. Not a good thing to have but you found the right place to be. The myalgias and neuropathies and the overall tiredness are all the new normal for a lot of us. I am sure that by now you have read some of the posts, if not then please do there is some realy good information here not available at your local dr's office.

[elephant]

Hi Nancy, I am a RN too, and also had to quit work a couple of years ago due to WG. Ditto what Jolanta said. Do you have kidney involvement? Are you checking your urine ( dip stick) for blood every week or two? Some of those symptoms will go away, when my wegeners was very active I had the same symptoms. I still have mild aches in my upper arms and some tingling in my left ring and pinkie finger, but that comes and goes.
Glad to have another Nurse on the Forum! I have learned so much from everyone on here.

[Sangye]

Hi Nancy-- welcome to the group! It's nice to have another nurse in the group. We currently have 3 that I know of-- Elephant, Lightwarrior and Lola. Sounds like the beginning of a joke.

Wow, after 12 yrs of limited now you have more extensive involvement. According to my Wegs doc at JHU, that's pretty much unheard of. Personally I'd bet on the vaccine-induced theory....

It sounds like you're having reactions you didn't have in earlier flares. How did they treat you before? I'm sure you're keeping an eye on your lab work. How is your bone marrow holding up? (I don't tolerate ctx-- destroys my bone marrow faster than I can make it.) Make sure your doc knows better than to judge you by how you look. It's very difficult, even for Wegs specialists, to ignore what their eyes tell them. But I'd be dead if they went by appearance.

[JanW]

Hello Nancy, and welcome to the group. Sorry you had to find us.

It looks to me like you are working on two of the three in terms of the ELK of this disease, an acronym I'm sure you've heard as a nurse. Here's hoping you don't get to K.

[Nancy]

Thanks for the welcome. I agree the H1N1 vaccine probably started a systemic reaction.. I would have short term flares once every 1-2 years and treat with Cytoxan (oral) and prednisone.. handled fairly quickly with no side effects from meds other than weight gain.. I was lucky initially for a fast Dx and treatment. All within 4 weeks. I started with coughing - lead to hemoptysis, fatigue and weight loss. Tried course of antibiotics for a "cold" after using 3 different families with no results. went to primary MD got chest xray - large granuloma - one side. I was working in Intensive Care at the time so knew all the specialists - spoke with Pulmonologist - was able to be scoped that day. He saw granuloma - could not get sample. I then spoke with a CV surgeon the next day - talked him into a biopsy within 3 days of scope after office exam. Biopsy was Positive - started heavy Prednisone and Cytoxan with a good Pulmonologist overseeing treatment. Since then - no big issues. Treatment with cough - quick resolution. Now the fatigue and heaviness are what is kicking my Butt... I will be returning to work soon - I have no idea on how people deal with this illness without insurance coverage from a job... it is scary to me...
So far lab work good - like I said will FU with a new ANCA/PR3/CBC/Chemistry/UA in about 2 weeks. I have been changed ot the IV route for cytoxan for the last 2 treatments - not certain if better or worse - had no issues with oral - but now have continuous low level nausea - anybody else have those issues? and yes, sorry to say my Weg MD offered me an antidepressant because I did not look like myself... I do not dip urine weekly... May be I should start - so far - kidney function good.. Thamls for all the insights and new options for treatment that others are recieving... good to keep us all in line...

[Nancy]

Jan - what is ELK I am not certain what you are discussing... Nancy

[Lola]

Hi Nancy, Welcome to the group. I think we all learn so much from each other, especially from new members. I find it interesting that you have quit working due to fatigue. I have been very silent online recently, most likely a bit depressed. I just made the decision, myself, to retire on July 9 - the Friday before my next round of Rituxan infusions.

For me, it will be permanent due to my age 61. I don't want to wait too long to retire for fear I will be too old physically. Do you see yourself being retired, or just taking a hiatus?

[JanW]

Rheumys use the acronym for the three most likely places WG will show: E is for Ear, Nose, Throat, Eye, L is for Lungs, K is for Kidneys.

When my doc says 'limited' he only means not involving kidneys. It could involve any other part of your body (in his view) and still be considered 'limited Wegeners'

[elephant]

I got the ELK by taking a good guess, but it caught me off gaurd at first. See we learn something new everyday.