Chadwyck
11-01-2011, 05:40 AM
Hello everyone, I'm new to this forum. My name is Chadwyck and I'm from London, Ontario, Canada. After reading so many posts in the forum I finally feel relieved that other people know what I mean when we're talking about Wegener's. For the past three years I've been sicker than ever. It all started out with a teary left eye. I thought it was because of the humidity in the summer of 2008, I didn't question it. It got so bad I had to have surgery on my tear duct April 2009. Two months later, the other eye gave me the same problem. The opthamologist who did my surgery on the left eye told me that surgery on the other side won't help either. He suspected Wegener's and put it on my medical records. If it wasn't for the insurance company for my work nagging me about "what did the doctor say" stuff, I would have never looked at my medical file seeing a suspicion that Wegener's Granulomatosis was a posing issue. Thanks to www.google.ca (http://www.google.ca) I looked up Wegener's and found out it was a rare type of vasculitis. I didn't know what vasculitis was either so I had to look that up as well.
After seeing what it was and all the symptoms I had over a two year period, I believed what I was reading. Considering the doctor saw crusting in my nose when I was getting my tear duct operated on, he too was suspicious. He also heard wheezing in my breathing when I was in the recovery room and told my mom to get me to an ENT. By October 2009, my kidneys got involved in the picture when my ankles hurt so much. What used to be a five minute walk to work down the road ended up being forty minutes each way. I ended up seeing a nephrologist and she needed a urine sample. After seeing both blood and protein in my test result in addition to the notes from the opthamologist, she too was convinced Wegener's was the culprit of all of this. So far we're 80% sure it's Wegner's but we needed proof. I was starting to feel emotionally fine knowing that there's a name to the I don't feel well statement. Finally the ENT did the biopsy of the nasal cavity first, then the nephrologist started me on prednisone and methotrexate while we were waiting for the lab results. They were so sure it was Wegener's they didn't want me to wait for the results since my kidneys were in the picture. Five weeks later, the test did in fact confirm I had Wegener's.
It was quite a long journey for me. The prednisone did get rid of the inflamation but the methotrexate was too weak to do anything but keep the Wegener's at bay. When I started tapering off the prednisone, Wegener's decided to show me it was in charge. So the nephrologist put me on cyclophosphamide in September 2010 to January 2011. By March of this year, I was finally in remission! The bad part is, because I was born with Alpha Thalassemia minor, the anemia I was born with "allowed" the prednisone to destroy my bones quicker. I was taking calcium prior to treatment to prevent this from happening but it still happened. I started on 60 mg of prednisone per day for the first 30 days and tapered down like I was told to. I was only on it for seven and a half months and it still caused me to get avascular necrosis of the left hip. Now, I'm waiting for a hip replacement as a result of the prednisone damage. Hey, I didn't call 911 reporting my hip missing nor stolen, but yet it has to be replaced. Go figure!
Thanks to the amazing work by the team of doctors I was seeing, now I'm in remission a year and a half later. I get the odd "mini flares" here and there but nothing as bad as when it was first suspected. As far as I'm concerned, I was already heading down death lane and now that I have it under control I've moved over to the life lane giving it another go. I know a lot of you may feel like Wegener's has had the best of you but there's hope for you to have the best of it. Doctors kept telling me that this is a fatal illness that can kill me if not treated. I understand that people have died from it even after treatment. We're all different and respond different to treatment. I look at it this way, if it can kill me, why didn't it? Maybe Wegener's is afraid of me and went to sleep, I don't know!
When people ask me what do I have, I either say Wegener's Granulomatosis or vasculitis but none of them know what I'm talking about. At least in this forum, you all do so I'm glad I signed up here. All the best to you Weggies out there!
Chadwyck
After seeing what it was and all the symptoms I had over a two year period, I believed what I was reading. Considering the doctor saw crusting in my nose when I was getting my tear duct operated on, he too was suspicious. He also heard wheezing in my breathing when I was in the recovery room and told my mom to get me to an ENT. By October 2009, my kidneys got involved in the picture when my ankles hurt so much. What used to be a five minute walk to work down the road ended up being forty minutes each way. I ended up seeing a nephrologist and she needed a urine sample. After seeing both blood and protein in my test result in addition to the notes from the opthamologist, she too was convinced Wegener's was the culprit of all of this. So far we're 80% sure it's Wegner's but we needed proof. I was starting to feel emotionally fine knowing that there's a name to the I don't feel well statement. Finally the ENT did the biopsy of the nasal cavity first, then the nephrologist started me on prednisone and methotrexate while we were waiting for the lab results. They were so sure it was Wegener's they didn't want me to wait for the results since my kidneys were in the picture. Five weeks later, the test did in fact confirm I had Wegener's.
It was quite a long journey for me. The prednisone did get rid of the inflamation but the methotrexate was too weak to do anything but keep the Wegener's at bay. When I started tapering off the prednisone, Wegener's decided to show me it was in charge. So the nephrologist put me on cyclophosphamide in September 2010 to January 2011. By March of this year, I was finally in remission! The bad part is, because I was born with Alpha Thalassemia minor, the anemia I was born with "allowed" the prednisone to destroy my bones quicker. I was taking calcium prior to treatment to prevent this from happening but it still happened. I started on 60 mg of prednisone per day for the first 30 days and tapered down like I was told to. I was only on it for seven and a half months and it still caused me to get avascular necrosis of the left hip. Now, I'm waiting for a hip replacement as a result of the prednisone damage. Hey, I didn't call 911 reporting my hip missing nor stolen, but yet it has to be replaced. Go figure!
Thanks to the amazing work by the team of doctors I was seeing, now I'm in remission a year and a half later. I get the odd "mini flares" here and there but nothing as bad as when it was first suspected. As far as I'm concerned, I was already heading down death lane and now that I have it under control I've moved over to the life lane giving it another go. I know a lot of you may feel like Wegener's has had the best of you but there's hope for you to have the best of it. Doctors kept telling me that this is a fatal illness that can kill me if not treated. I understand that people have died from it even after treatment. We're all different and respond different to treatment. I look at it this way, if it can kill me, why didn't it? Maybe Wegener's is afraid of me and went to sleep, I don't know!
When people ask me what do I have, I either say Wegener's Granulomatosis or vasculitis but none of them know what I'm talking about. At least in this forum, you all do so I'm glad I signed up here. All the best to you Weggies out there!
Chadwyck