Confused with pANCA test and doc recommendations

**lovetoswim** · 03-25-2017, 11:52 AM

Hi everyone, I'm so glad I found this website, although the more I read, the more scared I am. I, like so many on this forum, have led a clean life, no meat, no sweets, 2-3 hours of exercise a day for the last 30 years. My only issue was vertigo and sinus infections that lasted for weeks. Since January of 2016, I've had chronic sinusitis, and in December, had pneumonia, which I quickly recovered from, but shortly after finishing the antibiotics, I got a raging sinus infection and the flu. The pattern has been that a week after I finish the antibiotics and 5 pack prednisone, I start getting all the sinus infection symptoms back. Right now, my energy level is high, although I still have minor mucus discharge and tinnitus. I only usually missed 3 days a year of exercise, but in the last 3 months, I've missed an entire total of 1 month. Something isn't right. My family doc suggested I see an immunologist, and my pANCA was 1:3 and Lymphs were above normal. I went to an ENT to inquire about a nasal biopsy and he does sinus surgery along with it. I am opposed to doing that b/c he will put me on high doses of prednisone first and do the surgery, followed by more meds. If the nasal biop is negative, I will still need a lung biopsy. Is it possible to find a doc who will just do the nasal biopsy without the sinus surgery "package?"

Also, since i feel well right now, if the lung biopsy comes back positive, do I have to immediately go on those scary meds, even though I feel almost "normal?" I know my life is going to change, and not for the better. I can handle sinus infections, but the attacks that I have read on this website that others have suffered is really scary. I barely take a handful of aspirin a year, and taking chemo drugs and high does of prednisone when I feel ok seems a little crazy to me.

I live in the Philadelphia area, so if anyone can give me lung, ENT or rheumy recommendations, I would be most grateful. sorry for all the questions.

**Pete** · 03-25-2017, 12:48 PM

You may want to get an appointment with Dr Peter Merkel in Rheumatology at University of Pennsylvania. He's among the best in the world at treating Vasculitis.

Typical therapies for Vasculitis often include high dose prednisone along with an immunosuppressant.

The good news is that with proper care, you can have a near normal lifestyle. I'm 70, and I swim 1,000 yards twice a week.

Good luck!!

**John S** · 03-25-2017, 01:26 PM

Originally Posted by lovetoswim

Hi everyone, I'm so glad I found this website, although the more I read, the more scared I am. I, like so many on this forum, have led a clean life, no meat, no sweets, 2-3 hours of exercise a day for the last 30 years. My only issue was vertigo and sinus infections that lasted for weeks. Since January of 2016, I've had chronic sinusitis, and in December, had pneumonia, which I quickly recovered from, but shortly after finishing the antibiotics, I got a raging sinus infection and the flu. The pattern has been that a week after I finish the antibiotics and 5 pack prednisone, I start getting all the sinus infection symptoms back. Right now, my energy level is high, although I still have minor mucus discharge and tinnitus. I only usually missed 3 days a year of exercise, but in the last 3 months, I've missed an entire total of 1 month. Something isn't right. My family doc suggested I see an immunologist, and my pANCA was 1:3 and Lymphs were above normal. I went to an ENT to inquire about a nasal biopsy and he does sinus surgery along with it. I am opposed to doing that b/c he will put me on high doses of prednisone first and do the surgery, followed by more meds. If the nasal biop is negative, I will still need a lung biopsy. Is it possible to find a doc who will just do the nasal biopsy without the sinus surgery "package?"

Also, since i feel well right now, if the lung biopsy comes back positive, do I have to immediately go on those scary meds, even though I feel almost "normal?" I know my life is going to change, and not for the better. I can handle sinus infections, but the attacks that I have read on this website that others have suffered is really scary. I barely take a handful of aspirin a year, and taking chemo drugs and high does of prednisone when I feel ok seems a little crazy to me.

I live in the Philadelphia area, so if anyone can give me lung, ENT or rheumy recommendations, I would be most grateful. sorry for all the questions.

They might be able to see something with a CT scan of your lungs.

**lovetoswim** · 03-25-2017, 01:38 PM

Thank you, Pete. Will he be the person that would do the lung biopsy?

**lovetoswim** · 03-25-2017, 01:39 PM

Hi John, I had a chest CT. Are you saying they could see if I have Wegs?

**Pete** · 03-25-2017, 01:45 PM

Originally Posted by lovetoswim

Thank you, Pete. Will he be the person that would do the lung biopsy?

I don't know if he has surgical expertise. I know that he cares for several people on this forum, and that he's known as one of the best at treating Vasculitis.

Rheumatologists typically lead the treatment of Vasculitis. They work with other specialties as needed. In my case, I've seen ENT, pulmonologist, urologist, chiropractor, nephrologist, and neurologist as different issues have arisen.

I urge you to see a Vasculitis specialist ASAP. This disease can do a lot of damage in a hurry.

**lovetoswim** · 03-25-2017, 01:47 PM

I just realized he's the rheumatologist. I do need to find a lung doctor first, so I can get a definitive diagnosis, correct? Would Dr. Merkel treat me without having had a biopsy?

**lovetoswim** · 03-25-2017, 01:48 PM

Also, Pete, are you still taking medication? Were/are you able to exercise while on meds?

**Pete** · 03-25-2017, 02:23 PM

Originally Posted by lovetoswim

Also, Pete, are you still taking medication? Were/are you able to exercise while on meds?

I take 5 mg/day prednisone and 3/week bactrim. I also take rituximab as needed (annually for the past couple of years). I have also taken cyclophosphamide and methotrexate. My prednisone dosage has ranged as high as 60 mg/day. That gave me a ravenous appetite that helped me regain the 25 lbs I lost at disease onset plus about 20 more. I've lost 10 pounds of the overage, but I've plateaued at about 10 pounds over my pre-wegs weight. I've only been completely off prednisone for about four months, but disease symptoms reappeared. My last taper two years ago got me down to 3 mg/day before symptoms reappeared again, so I went back to 5 mg and have stayed there.

I was very sick at disease onset and had a major relapse about a year later. I resumed exercise very gradually and worked up to walking 3 miles 3-4 times a week. I resumed swimming a couple of years ago, but was off and on with it until sciatica from an old back issue kicked in, so I only walk once or twice a week for 1-2 miles. I now swim twice a week. I've been doing 5x200 yards on 5-minute cycles for the past three weeks. The ultimate goal is 1,500 yards non-stop in about 35-40 minutes. Golf season will be here soon (I hope), and I plan to play once or twice a week.