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suska (@suska)

GPA granulomatosis with polyangiitis

Autoimmune Diseases | Last Active: Mar 18, 2022 | Replies (44)

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How old are you now? Where are you from? And, what meds are you on?

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Replies to "How old are you now? Where are you from? And, what meds are you on?"

Hi! I just turned 23, I’m from Buckeye AZ and for GPA I am on prednisone and azathioprine (imuran) 150 mg. Since I was so strongly immunosuppressed when I was first diagnosed, I caught Valley Fever and it turned into valley fever meningitis which is an uncureable meningitis so I am on a lot of medication for that as well!

I was diagnosed with GPA in 2007. I am currently 70 and live near Dallas
Texas. Initially I was diagnosed by a very good rheumatologist who started me on methotrexate while he referred me to a pulmonologist for blood in the lungs. I was also exhibiting blood in the urine and general weakness with coughing. The pulmonologist immediately hospitalized me for testing and substituted cytoxin and prednisone for the methotrexate (massive doses of each). I received a blood transfusion and when stabilized was released. It turns out the kidney damage also affected red blood cell production. For one year I received quarterly injections of Procrit to force RBC production until the kidneys recovered sufficiently. I stayed on cytoxin for a year when I was transitioned to 2 grams a day of Mycophenylate and 20mg per day of prednisone. Over the years my urologist has slowly decreased the dosage of each while monitoring, primarily my ANCA levels. The ANCA readings have been below detectable levels since release from the hospital. Currently I take 250 mg of Mycophenylate each day and 2.5 mg of prednisone every other day. In January I am going to cease taking the Mycophenylate and in 30 days have lab work done to check the ANCA levels. I have had no adverse reactions to any meds except some hair loss on the cytoxin (it later came back and somewhat darker). While on cytoxin I developed pneumocystis pneumonia (compromised bacterial immune system). That was nasty and I was on Smz/TMP for years, until the mycophenylate dosage was significantly reduced.