Sheena
11-06-2010, 07:05 PM
Hi Everyone
I have just joined up to this forum and I am excited to chat to you all.
I was diagnosed with Wegeners 3 years ago. It started out with flu symptoms, a cough I couldn't get rid off, blocked sinuses, a red left eye, joint pains that moved around my body, a rash, and feet so sore that I could barely walk on them. I went into Hospital for a week but they couldn't figure out what was wrong and sent me home on a small dose of Prednisone. A few weeks later I had an appointment with an ENT surgeon who recognised the symptoms as Wegeners and sent me for an ANCA blood test. That weekend everything got suddenly worse when I started coughing up blood and having difficulty breathing. I was rushed into hospital and they already had the test results that confirmed Wegeners. That night I started Chemotherapy!!!!
At 26 years old you don't really expect your body to fail you. I was in hospital for 4 weeks, the first 3 barely able to get out of bed. I had to leave my job and concentrate on getting better. I remember when I came home from hospital that having a shower was the biggest part of my day, it was just so exhausting!!!
I had 3 months of chemo with high doses of prednisone. I put on 16kg in just over a month and my face was huge. To be honest I think the physical changes from the prednisone was and still is one of the hardest things to deal with.
After the 3 months I moved to methotrexate and started bringing down the prednisone dose.
I have now moved to Imuran 150mg and 5mg prednisone. I recently experimented with a drug called Arava but that didn't do anything different and the long term side effects were not worth staying on it, so as of last week I am back on Imuran.
I really hope that a day comes when I can come off these drugs but at the moment my results seem to be stuck at a certain point and are not pushing past that. I struggle a lot with tiredness, but I do try to just push through it.
I am now back in full time work and loving it! I had amazing friends and family that have really helped me and been there for me over the last 3 years, but I must admit that I am excited to talk to people that have wegeners as I haven't met or spoken to anyone that has wegeners and really understands what it is like and what I have been through and what I am going through
Look forward to hearing from you all and sharing our stories
Sheena
I have just joined up to this forum and I am excited to chat to you all.
I was diagnosed with Wegeners 3 years ago. It started out with flu symptoms, a cough I couldn't get rid off, blocked sinuses, a red left eye, joint pains that moved around my body, a rash, and feet so sore that I could barely walk on them. I went into Hospital for a week but they couldn't figure out what was wrong and sent me home on a small dose of Prednisone. A few weeks later I had an appointment with an ENT surgeon who recognised the symptoms as Wegeners and sent me for an ANCA blood test. That weekend everything got suddenly worse when I started coughing up blood and having difficulty breathing. I was rushed into hospital and they already had the test results that confirmed Wegeners. That night I started Chemotherapy!!!!
At 26 years old you don't really expect your body to fail you. I was in hospital for 4 weeks, the first 3 barely able to get out of bed. I had to leave my job and concentrate on getting better. I remember when I came home from hospital that having a shower was the biggest part of my day, it was just so exhausting!!!
I had 3 months of chemo with high doses of prednisone. I put on 16kg in just over a month and my face was huge. To be honest I think the physical changes from the prednisone was and still is one of the hardest things to deal with.
After the 3 months I moved to methotrexate and started bringing down the prednisone dose.
I have now moved to Imuran 150mg and 5mg prednisone. I recently experimented with a drug called Arava but that didn't do anything different and the long term side effects were not worth staying on it, so as of last week I am back on Imuran.
I really hope that a day comes when I can come off these drugs but at the moment my results seem to be stuck at a certain point and are not pushing past that. I struggle a lot with tiredness, but I do try to just push through it.
I am now back in full time work and loving it! I had amazing friends and family that have really helped me and been there for me over the last 3 years, but I must admit that I am excited to talk to people that have wegeners as I haven't met or spoken to anyone that has wegeners and really understands what it is like and what I have been through and what I am going through
Look forward to hearing from you all and sharing our stories
Sheena