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Hey from Colorado
Hi, I found this website by googleing about Agent Orange ane Wegener's I was shocked to get 3 or 4 responses to my question. As I looked at the site it I realized how informative everyone's storys were so here is mine in the hopes it will help someone else.
I'm 64 years old (yikes), retired and was in great health when I retired at age 60. I am also a Vet with a disability rating so I get my care from the V.A. In Denver CO. In 2011 I was in physical therapy for a consistant pain in my right shoulder, at the time I thought it was because of my horrible golf swing. I also had suffered from ear pressure, mostly in my right ear. I went to the Doc once about the ear pressure and was sent home with three different meds (nose sprays and antibiotics). I was also told to use a nasel spray to help clear up the problems. Several months later I was at physical therapy when my therapist said he wouldn't treat me because I looked to sick and weak. I had been suffering flu like symptons and thought I could handle it and get back on my feet. At his insistance I went down to the ER and got checked out.
An X-ray showed "Diffuse alveolar hemorrhage" or bleeding in the lungs. I was admitted and treated with high doses of steriods a bronchoscopy was done and about 25 viles of blood were taken. This was on December 28 2011, I stayed in for 3 days then was discharged with a follow up appointment for about a week later. Before that appointment I got a call to come in to see a Doctor in Rheumatology...Welcome to Wegener's!
I was put on the standard (according to what I'm reading) drugs Prednisone, folic acid, Ranitidine (for the stomic) and scheduled for an infusion of Rituximab. I was also given Oxygen for home use at this time. By the end of May early June I was in remission and back in the gym and working on that golf swing! At the time I was down to 7.5 of pred. and oh yeah I had been pushed into diabities (They had told me I was boarderline and it was comming anyway) and was on Metformin and NPH insulin, down to about 5 units a day. Basiclly life was pretty much normal (except for the drugs).
Then in August 2012 my world turned upsidedown! I had a couple of eppisodes of severve pain in my feet and then my whole body. Went in to ER and was given pain meds, examined and sent home. I had a follow up visit where they did a biopsy of the ulcers that had formed on my lower legs and concluded it was a wegener's flair. My Pred. was increased and another appointment was scheduled. Before that I lost all feeling in my feet and I couldn't stand up, my feet felt like half inflated beach balls. I went to ER, gotta be truthful here I was scared I would never walk again. The Doc there thought I had Gillians Beret (spelling sorry). Ended up in ICU for 8 days while the docs tried to decide what was happening! It is kind of funny to watch the Rummy guys discuss their theory with the Nurology guys while you lay there wondering what the hell is going on! I stayed in the hospital for about a month then went home with a wheelchair and a walker. I had an infusion of Cytoxin which didn't do anything except make me sick...then another of Rituximab which helped me to move toward remission again. I have great friends that I worked with for 30 years, many of whom are also retired and they were a Godsend. They helped make my house more wheelchair/walker friendly and got me back and forth to Doctor appointments. I was using braces to walk with and because I had no feeling in my feet didn't notice a couple of sores that had developed. Long story short by the time we were treating them they had gotten infected (I had started MTX and my imuine system wasn't helping fight) which ended up in left pinky toe and the bone behind it being amputated as well as the middle toe on my right foot. I also developed a cataract in my right eye from the Prednisone.
OK fast foward to today I finally have healed on both feet and had cataract surgery so I can see! I had hand controls installed in my car and have been driving for about 8 months now. I have been in physical theray and am able to walk with out braces (nothing fancy and I use a cain if I'm venturing out in the world). Recently I have been able to drive using my right foot but still rely on the hand control as a back up!
I think the thing that has helped me the most is the great friends I have and my two kids and ex-wife (who is a good friend) who have been here to support me from day one. One last thing the people at the V.A. have been GREAT, the docs, the nurses, nurses aids, and especally the physical therapists who got me up and walking when I didn't think I could...all just great!
Thanks for the oppurtunity to post my story.
Steve
From sunny Colorado, well not today it's snowing but tomorrow....
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welcome, Steve, from the def sunny Israel 
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