Hello Everyone, My husband was diagnosed in September 2016 and it has been a bumpy ride (to say the least). He has many other health issues and, of course, some could be related to Wegs or not. You never really know. We do know that he had suffered with sinus and lung problems for years. Always being diagnosed with colds, bronchitis, sinusitis, etc. Finally in 2016, his GP did an ANCA Titres test and we started on this journey. His kidney function was so low that they had him in the hospital within days to do the kidney biopsy for confirmation. They had to work fast to keep him from going into kidney failure. My husband's case is further complicated by the fact that he has a mechanical heart valve and has to be on warfarin. So, not only are biopsies made more difficult, but every medication he is on affects his INR. His initial treatment choice was the combo of Cyclophosphamide & Prednisone. He did good during this phase. Of course, he did have the prednisone side effects, but tolerated the Cyclo well. Kidneys responded and they decided it was time to switch to Azathioprine for maintenance phase. This lead us to two life threatening stays in the hospital where no one could figure out what was making him so sick. They even brought in an Infectious Disease Specialist. Long story short, the Azathioprine was toxic to him for whatever reason. Can't take Aza, so now we go the Methotrexate. His kidneys still respond well to this treatment, but he felt horrible. No quality of life on this med for him. We are now being seen by a Rheumatologist. Rheumatologist switches him to Celecept and he seems to be doing better. That is until he develops Shingles because his immune system in compromised! It definitely feels like he can't catch a break. Now we are pretty sure he is experiencing a flare even though he is still on meds.
I hurt so bad for him and try to do anything I can to help. I was doing some internet research last night and came across this support group. I am so happy I did. Just the little bit I have read has helped! While I was on this site last night, I came across the Weggie Map! I pulled it up and just sat there with tears running down my face (just like I have now). Those Pins! Each representing someone that knows what we are facing. Suddenly I didn't feel so alone. He was asleep last night when I found you guys. So, first thing this morning, I told him all about you. He sat there with tears in his eyes. Tonight, when I get home from work, I am going to help him sign up also.
So, if you are spouse or family member of a Weg's, I would love to connect with you. Maybe learn and share together on how to help the one we love with Weg's!
Thank you so much & Prayers to All
Lynette