Ionut
04-21-2014, 09:51 PM
Hi guys,
I am posting on behalf of my mother as she is not so familiar with forums. I will check back here from time to time and reply to any questions. Let me start with a short history of the disease and progress so far, please bear with me as English is not my first language and medical terms will be even harder to write correctly.
She was diagnosed in 2005 at the age of 49. It took Romanian doctors 5 months to find out what the problem was. First symptoms were sinus pain on the right side. Doctors thought this was a dental issue and removed 2 teeth, it did not help. After this a mark on the left foot appeared (like a big pimple). Dermatologist checked it and concluded it was not a skin issue and sent her to have an x-ray. This x-ray showed that same mark was also on the lower part of the right lung and was starting to appear also on the upper part of the right lung. She entered a specialized lung hospital where they found out the disease is Wegener Granulomatosis. In July 2005 she started on treatment of Medrol pills and Cyclophosphamide IV for 1 year. After 1 year of treatment the leg mark disappeared but the lung one was still present so they operated removed the lower part of the right lung and cleaned the upper part. This was happening in August 2006. After the operation she continued the same treatment only with progressive reduction in the mgs of Medrol. After another year the upper part of the right lung became ill again (the one that was just cleaned during the first operation). In July 2007 they operated again and removed completely the right lung. She continued the treatment with Medrol (down to 4 mg now) and Cyclophosphamide was replaced by Imuran (Azathioprina). In May 2009 they decided to stop the treatment for a while, now she was just taking Medrol 4mg. In August 2009 the disease spread the the right eye. In September 2009 they operated on the right eye -the eye is still there but the optical nerve is completely damaged and she lost vision in it. After this operation she underwent a shock treatment of Medrol and Cyclophosphamide. She was very ill from this and could only take it for 1 month. They continued after this month again with Medrol 4mg and Imuran 100mg/day. She is still taking the same medicine now and will go for a checkup at the beginning of the next month.
Thanks for reading this long story and please feel free to ask any question if something is not clear.
Honestly I don't know what I expect writing this ... maybe just having the story read...
Get well soon everybody!
I am posting on behalf of my mother as she is not so familiar with forums. I will check back here from time to time and reply to any questions. Let me start with a short history of the disease and progress so far, please bear with me as English is not my first language and medical terms will be even harder to write correctly.
She was diagnosed in 2005 at the age of 49. It took Romanian doctors 5 months to find out what the problem was. First symptoms were sinus pain on the right side. Doctors thought this was a dental issue and removed 2 teeth, it did not help. After this a mark on the left foot appeared (like a big pimple). Dermatologist checked it and concluded it was not a skin issue and sent her to have an x-ray. This x-ray showed that same mark was also on the lower part of the right lung and was starting to appear also on the upper part of the right lung. She entered a specialized lung hospital where they found out the disease is Wegener Granulomatosis. In July 2005 she started on treatment of Medrol pills and Cyclophosphamide IV for 1 year. After 1 year of treatment the leg mark disappeared but the lung one was still present so they operated removed the lower part of the right lung and cleaned the upper part. This was happening in August 2006. After the operation she continued the same treatment only with progressive reduction in the mgs of Medrol. After another year the upper part of the right lung became ill again (the one that was just cleaned during the first operation). In July 2007 they operated again and removed completely the right lung. She continued the treatment with Medrol (down to 4 mg now) and Cyclophosphamide was replaced by Imuran (Azathioprina). In May 2009 they decided to stop the treatment for a while, now she was just taking Medrol 4mg. In August 2009 the disease spread the the right eye. In September 2009 they operated on the right eye -the eye is still there but the optical nerve is completely damaged and she lost vision in it. After this operation she underwent a shock treatment of Medrol and Cyclophosphamide. She was very ill from this and could only take it for 1 month. They continued after this month again with Medrol 4mg and Imuran 100mg/day. She is still taking the same medicine now and will go for a checkup at the beginning of the next month.
Thanks for reading this long story and please feel free to ask any question if something is not clear.
Honestly I don't know what I expect writing this ... maybe just having the story read...
Get well soon everybody!