COWG
10-27-2013, 02:16 PM
Hello,
I am posting for my husband Rick, who has had Wegener's for 12 years. He is quite ill right now. We have three teenagers who have grown up with a loving Dad that unfortunately was sick most of their life, never yet reaching remission. My husband started with sinus problems, loss of hearing, ( which thankfully he regained most.) Then it continued to bells palsey, and weight loss, as well as difficulty breathing. After multiple doctors, sinus surgeries and hospitals here in CO, we looked for symptoms on Web MD. We then drove to The Center for Rheumatic Disease in St. Louis. He was diagnosed that day.
Rick has been on Bactrim, Cytoxin, Methotrexate, Cell cept, multiple antibiotics from the recurring sinus problems. He has now had lung problems since last Christmas. Rick is being treated at National Jewish. He is presently doing Cytoxin infusions and has only had one Rituxin infusion. They are telling us to wait until Dec for next RTX infusion...not sure why. His lungs are not improving :( He is on 40-50 mg of prednisone daily as well. He continues to work, which amazes me, because he can't breathe out of his left lung.
We have learned to add laughter to our lives, continue strong faith, and learn to make last minute changes according to his health.
If anyone has better insight into RTX treatment, or has had similar lung issues-since this year was our first real lung problem-please let us know. The doctors at Nat. Jewish also injected steroids into his lungs, but that only alleviated the symptoms slightly for a few weeks. They told us a lung stint does not do as well in a dry climate. Any opinions on that?
Thanks for taking the time to read :)
COWG
I am posting for my husband Rick, who has had Wegener's for 12 years. He is quite ill right now. We have three teenagers who have grown up with a loving Dad that unfortunately was sick most of their life, never yet reaching remission. My husband started with sinus problems, loss of hearing, ( which thankfully he regained most.) Then it continued to bells palsey, and weight loss, as well as difficulty breathing. After multiple doctors, sinus surgeries and hospitals here in CO, we looked for symptoms on Web MD. We then drove to The Center for Rheumatic Disease in St. Louis. He was diagnosed that day.
Rick has been on Bactrim, Cytoxin, Methotrexate, Cell cept, multiple antibiotics from the recurring sinus problems. He has now had lung problems since last Christmas. Rick is being treated at National Jewish. He is presently doing Cytoxin infusions and has only had one Rituxin infusion. They are telling us to wait until Dec for next RTX infusion...not sure why. His lungs are not improving :( He is on 40-50 mg of prednisone daily as well. He continues to work, which amazes me, because he can't breathe out of his left lung.
We have learned to add laughter to our lives, continue strong faith, and learn to make last minute changes according to his health.
If anyone has better insight into RTX treatment, or has had similar lung issues-since this year was our first real lung problem-please let us know. The doctors at Nat. Jewish also injected steroids into his lungs, but that only alleviated the symptoms slightly for a few weeks. They told us a lung stint does not do as well in a dry climate. Any opinions on that?
Thanks for taking the time to read :)
COWG