Dkathleen
12-16-2014, 05:28 PM
Hello everyone,
I have been reading posts on this forum for about a year and finally decided to join. Initially, I thought I had GPA. I performed the classic internet search, scared the heck out of myself then found this forum. The posts on this site provided me with much needed information and hope.
This is is my first time joining a forum or support group. By doing so, I am coming to terms with my diagnosis of MPA. A kidney biopsy confirmed it. I have positive ANCA too. Luckily, there is no kidney damage.
Background of diagnosis- In October 2013, I started to feel poorly. I thought it was the office cold. Then it felt like the flu. After about a week and two visits to my GP it was confirmed that I did not have the flu. I had back pain, but no cough until the second visit. My GP figured I had back pain from the cough although I pointed out that the pain came before the cough. He sent me home with Vicodin. Luckily, I had a standing appointment with my rheumatologist a couple days later.
I was diagnosed with Scleroderma (CREST) with mild interstitial lung disease about 20 years ago. I am 46. I was not on any medication and only went for check ups every six months. Denial, a bit of luck and stubbornness is how I deal with scleroderma. Not sure it will work for vasculitis too.
My rheumy sent me for a CAT scan of my lungs. My lungs were cloudy. He was thinking lung cancer. They could not get me in for a bronchoscope for a couple days (Monday). My lungs got progressively worse. I started having severe spasms. I used up all the Vicodin from my GP.
They did the bronchoscope and promptly admitted me to the hospital. Vasculitis was not on their list of possible diagnosis for several days. They ran lots of blood tests to rule out infectious diseases, etc. my lung biopsy came back negative for vasculitis. ANCA positive. Positive kidney involvement. After nine days I was able to go home. I was on 80 mg of prednisone and Bactrim. I took a month off from work. I returned to work a year ago on December 1, 2013.
I am in a drug induced remission.
Rituximab - four, once a week treatments. I had an allergic reaction with the first treatment. They gave me Benadryl and Solumedral. All went well.
Imuran- at first all was well then allergic reaction. Pancreas issues.
i am now on 2000 of Cellcept and 2.5 Prednisone. I was completely off Prednisone I for three weeks in August,but crashed hard. Patience is not my virtue. I am learning! I am tapering the Prednisone and hope to be off by the end of the year. No rushing this time around. Exhaustion to the extreme.
My wish is to provide helpful information and hope for others as was done for me in my time of need.
Thank you.
I have been reading posts on this forum for about a year and finally decided to join. Initially, I thought I had GPA. I performed the classic internet search, scared the heck out of myself then found this forum. The posts on this site provided me with much needed information and hope.
This is is my first time joining a forum or support group. By doing so, I am coming to terms with my diagnosis of MPA. A kidney biopsy confirmed it. I have positive ANCA too. Luckily, there is no kidney damage.
Background of diagnosis- In October 2013, I started to feel poorly. I thought it was the office cold. Then it felt like the flu. After about a week and two visits to my GP it was confirmed that I did not have the flu. I had back pain, but no cough until the second visit. My GP figured I had back pain from the cough although I pointed out that the pain came before the cough. He sent me home with Vicodin. Luckily, I had a standing appointment with my rheumatologist a couple days later.
I was diagnosed with Scleroderma (CREST) with mild interstitial lung disease about 20 years ago. I am 46. I was not on any medication and only went for check ups every six months. Denial, a bit of luck and stubbornness is how I deal with scleroderma. Not sure it will work for vasculitis too.
My rheumy sent me for a CAT scan of my lungs. My lungs were cloudy. He was thinking lung cancer. They could not get me in for a bronchoscope for a couple days (Monday). My lungs got progressively worse. I started having severe spasms. I used up all the Vicodin from my GP.
They did the bronchoscope and promptly admitted me to the hospital. Vasculitis was not on their list of possible diagnosis for several days. They ran lots of blood tests to rule out infectious diseases, etc. my lung biopsy came back negative for vasculitis. ANCA positive. Positive kidney involvement. After nine days I was able to go home. I was on 80 mg of prednisone and Bactrim. I took a month off from work. I returned to work a year ago on December 1, 2013.
I am in a drug induced remission.
Rituximab - four, once a week treatments. I had an allergic reaction with the first treatment. They gave me Benadryl and Solumedral. All went well.
Imuran- at first all was well then allergic reaction. Pancreas issues.
i am now on 2000 of Cellcept and 2.5 Prednisone. I was completely off Prednisone I for three weeks in August,but crashed hard. Patience is not my virtue. I am learning! I am tapering the Prednisone and hope to be off by the end of the year. No rushing this time around. Exhaustion to the extreme.
My wish is to provide helpful information and hope for others as was done for me in my time of need.
Thank you.