bdawg212
01-06-2015, 02:26 PM
Hey everybody, I just joined today, and I'm in need of some advice or input if you wouldn't mind.
I have had WG/GPA (whatever we're calling it today [emoji6]) since June of 2010 right before my 25th birthday. I was admitted into the ICU after a CBC showed renal failure. I was also in respiratory distress. I was tested for every disease under the sun, lupus, HIV, many cancers, etc. I didn't respond to an anti fungal, antibiotic, or anything else until they put prednisone into my IV. Obviously, that made me bounce back within 24 hours, but they still couldn't figure it out. My ANKA tests were repeatedly negative. I was released, then ended up back in the ER five days later with a severe colon bleed. My HGB was down to a 6.0. I received blood transfusions and a colonoscopy with biopsy. The biopsy showed nothing. A kidney biopsy that was sent to Mayo Clinic showed nothing. There were granulomas in my lungs that left after pred treatment. They were unable to biopsy any of these granulomas because my airway was so inflamed it was compared to a "crushed straw". Again, the prednisone helped and I left the hospital without a diagnosis. 2011, I had another milder flare. Repeat with 2012. In 2013, I had a severe flare that saw my sed rate at 99 and my CRP at 11.0. Finally, I found a doctor who was willing to take me on. At first he thought I had polyarteritis nodosa because I have had no lung or renal involvement since 2010, but recently my doctor has arrived at GPA instead. Injectable methotrexate has had no effect. I had four Rituxan infusions two weeks apart. The first was on Halloween. My blood tests from Friday just came back today and my CRP and sed rate are at 4.7 and 76 respectively, WORSE than they were pre-infusion. Therefore, the Rituxan, the super expensive supposed-to-be miracle, has done nothing. As of today, I'm back on 40mg of pred and starting Cellcept. It's funny, because I feel okay, except for bowel involvement. I have had a lot of bowel involvement, which I guess is rare in GPA, but can happen. I also have joint pain and sinus ulceration. However, I go to work every day as a translator, and I'm able to keep up with cooking and laundry and housework and family and friends. My doctor tells me that inflammation that constantly high should keep me on my ass, but it just doesn't.
I'm scared to death that nothing will work. Just looking for support and hopefully I can help some others along the way.
I have had WG/GPA (whatever we're calling it today [emoji6]) since June of 2010 right before my 25th birthday. I was admitted into the ICU after a CBC showed renal failure. I was also in respiratory distress. I was tested for every disease under the sun, lupus, HIV, many cancers, etc. I didn't respond to an anti fungal, antibiotic, or anything else until they put prednisone into my IV. Obviously, that made me bounce back within 24 hours, but they still couldn't figure it out. My ANKA tests were repeatedly negative. I was released, then ended up back in the ER five days later with a severe colon bleed. My HGB was down to a 6.0. I received blood transfusions and a colonoscopy with biopsy. The biopsy showed nothing. A kidney biopsy that was sent to Mayo Clinic showed nothing. There were granulomas in my lungs that left after pred treatment. They were unable to biopsy any of these granulomas because my airway was so inflamed it was compared to a "crushed straw". Again, the prednisone helped and I left the hospital without a diagnosis. 2011, I had another milder flare. Repeat with 2012. In 2013, I had a severe flare that saw my sed rate at 99 and my CRP at 11.0. Finally, I found a doctor who was willing to take me on. At first he thought I had polyarteritis nodosa because I have had no lung or renal involvement since 2010, but recently my doctor has arrived at GPA instead. Injectable methotrexate has had no effect. I had four Rituxan infusions two weeks apart. The first was on Halloween. My blood tests from Friday just came back today and my CRP and sed rate are at 4.7 and 76 respectively, WORSE than they were pre-infusion. Therefore, the Rituxan, the super expensive supposed-to-be miracle, has done nothing. As of today, I'm back on 40mg of pred and starting Cellcept. It's funny, because I feel okay, except for bowel involvement. I have had a lot of bowel involvement, which I guess is rare in GPA, but can happen. I also have joint pain and sinus ulceration. However, I go to work every day as a translator, and I'm able to keep up with cooking and laundry and housework and family and friends. My doctor tells me that inflammation that constantly high should keep me on my ass, but it just doesn't.
I'm scared to death that nothing will work. Just looking for support and hopefully I can help some others along the way.