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I was just wondering it there is a common tread to coming down with GPA Vascular. Such as surgery, to much antibiotics, sepsis. Also how long for people living with GPA? I’m not trying to be morbid. I’ve had GPA for about a year with 7 month flare up. I’m just glad for spring so I can play in my garden. Thanks all and be safe.
I don't know if there is a common thread but I was very healthy when I developed GPA 42 years ago. There are way better treatments available now so I'm thinking life expectancy and quality of life is even better than when I started. Many people do quite well with it. Keep in mind as you read here and other places that you are reading about a select group within the group- mostly people who are having problems. The ones who are doing well are generally too busy to hang out here too much. Just reading here it can sound much worse than it is for most. I myself had twenty years of drug free remission- a very normal life during that time. Even during treatment life can be pretty normal.
I am 58 years-old, and about to retire - high school teacher. Mine started in August of 2019, and I considered myself very healthy. I was training for a marathon and I did weights. I had/have sinus and ear involvement. The summer of 2019, I started having sinus problems, and went to the doctor - three of them gave me medication for sinuses but they did not work. When I went to my fourth doctor, I asked for a referral to see an ENT doctor, at first he did not recognize my illness and gave me prednisone for 14 days - nothing happened. I went back and he recommended nose surgery and he discovered granulomas in my nose during surgery - after surgery he gave me 60 mg of prednisone and sent me to a rheumatologist - rheumy gave me 15 and then 20 mgs of methotrexate + the prednisone I was taking. Now things are in the "normal" side. For my ears I wear hearing aids only to teach, I am not taking prednisone anymore - I am still in 20 mg of methotrexate. I clean my nose twice a day and that clears my ears too - I use budesonide/distilledwater/saline. Would I be able to run a 10K again and train for a marathon? I don't think so, but I ride my bike and walk a lot - stay on my feet the whole day teaching. I was able to stop the prednisone side effects because I became a vegetarian, and now I need to make sure that the methotrexate side effects do not affect my body. So far - tiredness is my only problem. I sleep more than I used to.Quote:
Originally Posted by Tahoerich
Some people with GPA have done amazing physical feats, much more difficult than usual marathon, so recovery and future activity is very varied. It depends a lot upon the extent of the damage to the body and degree of remission obtained from treatment. And the motivation of the individual to perform.
My GPA diagnosis was also accidental in Aug 2019. I was all healthy, extremely active and keeping away from meds as much as possible until one day on vacation felt a strong pain in my back which I knew was kidney related.
I went into ER with kidney stones and came back diagnosed with extreme high markers of inflammation as well. By sheer luck my rheumi ordered ANCA titer tests which came positive and set in motion a lot series of tests for possible GPA. 1.5 of Methotrexate and Prednisone only to see another flare up recently which ended up with an kidney biopsy which confirmed the disease.
Its been a wild ride with all the Prednisone -> Methotrexate -> Rituximab and taken a toll on my body and overall health. As many have said here - once you have it, you just have to take it every day as it comes. Different people have different organ involvement and different degree of side effects. I hated meds in 2019 and here I am drugged with pretty potent meds :( But then - thats reality.
I was hit with a sudden pervasive rash and joint pain. No real trigger that I can pinpoint. Fortunately I live not five minutes from an excellent rheumy who got the diagnosis back within a few weeks, so with meds I’m fairly normal. I can’t exercise as much as I used to because of the fear of exposure to pathogens (I was wearing masks and obsessively washing my hands before it was cool), and I’m having osteo issues in my left hip, but still get out hiking and kayaking occasionally. As long as it’s not pro wrestling I’m usually fine.