Kansas, USA Wegener's Gal

[Nancy]

Thanks Jan - no my Rheumatologist has never used that phrasing and WG is not really common here overall... Thsi time I have had some hematuria ( blood in the urine) x 2 - but none last two checks. So fingers and toes crossed.. Before I only had granulmoas - mostly in Left lung... Treat with cytoxan/pred and leave some scar tissue - but resolve... New adventures await...
Also to answer Lola - I took a hiatus.. I was working as a ARNP in a Physical Medicine capacity - too much drain and needs a rest stop. I am currently in the middle of it. I have never had problems with getting a job - just could not keep up with expectations of 20-30 hours overtime as expected every 2 weeks. Better to find a different focus position as far as hours required vs. requested... I would not know how everything would work to stop now at 45 yrs. Life is very mysterious isn't it...

[elephant]

Nancy, just my opinion but working that amount of hours overtime can trigger a WG flare. I would still work as a RN, but something less stressful. I have come to terms that if I go back as a RN it will only be at a doctors office part - time. I never thought that I stop working because of a disease...it does get me down because I worked so hard to get an education and loved being a nurse. Like you state life is a mystery.

[Sangye]

I didn't get the ELK at all! I thought you meant it was a generic medical abbreviation like FUO= fever of unknown origin.

I've generally heard the same definition of limited as Jan. Nancy, why aren't they using ritux on you? It sounds like you've had a lot of ctx already. Flares every 1-2 yrs for 12 yrs that require the big gun of ctx-- it sounds like they're not getting good control. What meds are you on between flares?

[Sangye]

I agree with Elephant that working so many hours in a high stress job can cause Wegs to keep flaring. I hope I can get back to work sometime. I absolutely love what I do, too.

[Col 23]

Hello Nancy welcome to the group.
I thought I would add something here..about the Flu shot. I have been told or read Im not sure that while Im not in remission that I cant have vacinations. Does anyone else have an opinion on that.
Gone Crazy be back soon Col 23

[elephant]

If anyone one of us is on a immunosuppressive drug that lowers our immune system, we cannot take any live vaccine's. MMR ( measles, mumps and rubella) is live. There are others that I can't think of right now. I did take the H1N1 vaccine and flu shots. I had no reactions, but everyone is different.

[Col 23]

thanks for confirming that
cheers Col 23

[DEE]

hi col 23
like elephant i had flu injection and swine flu injection and was fine which was just aswell as hubby actually got swine flu!! which was an interseting time he stayed in his room and me to mine till he recovered . DEEx