New member looking for info c-anca+ Pr3+

[ltgangi]

Good Morning! I'm looking for info regarding a recent blood test I took. I have been suffering with a lot of pain and fatigue and have been going to doctors trying to figure out if I have Rheumatoid Arthritis. In the past I was told I had Fibromyalgia. Well the state of my body continues to get worse. Back in 2013 I was treated for Lyme Disease and symptoms improved. But returned after treatment. One infectious disease doctor thought the lyme was a false positive because of a low titre RF factor. Shortly thereafter my allergies went crazy. Had Bronchitis and then a collapsed lung and pneumonia. Went to an allergist and started on Allergy Shots. I have constant congestion in sinuses and throat and lungs. On Qnasl and Qvar. They seem to control it. I feel like someone switched my body. I've always had sinus infections since a child and allergies so that is not new, but the Asthma and congestion is. They did do a CT on my sinuses and nothing serious showed up. A cyst or two and a little sinusitis. In 2000 I had a central vein occlusion in my eye, that resolved itself, thankfully. I now have a floater in the same eye. I was in such pain recently I went back to the Rheumy. She tested me for Lyme and that came out positive but so did my ANCA. c-Anca and Pr-3 were both positive. I'm scheduled to have an ultrasound on my hands and wrists in two weeks. She put me on 10mg prednisone initially and then doxycycline. I'm due to see her June 2. So I'm wondering if a positive c-anca and pr-3 are found in other diseases besides GPA. After reading everyone's descriptions of their problems mine don't sound so serious, but I'm totally compromised physically from pain in muscles tendons and joints. The fatigue is brutal. I question whether I really have lyme because the test does seem to only show positive for IGM and not IGG. There was a reason my doctor did the ANCA test I'm sure and I will find out, but my patience is thin these days, I like to be on top of things. Any comments are appreciated.

[Dirty Don]

Welcome Itgangi....patience is mandatory, so reframe your mind & then get after them to get the dx correct. Certainly, there are many diseases with similar symptoms as WG, but docs should be narrowing their dx with the tests instead of chasing the first recognizable symptom & administering drugs. WG patients get that a lot...they thought I had TB or Valley Fever...really? After nearly dying, Mayo got to the point & started the correct protocol after another hospital staff couldn't get it right but at least had the clarity to ask someone else, Mayo. It is also possible to have more than just WG as many on here have found. Anyway, your condition looks like, sounds like WG & THAT needs to be eliminated before the docs go on to their plethora of other diseases they do recognize. Keep after the docs or get new ones! Best to you.

[drz]

I think most of us have several incorrect diagnostic guess before our diagnosis of Wegs was confirmed. I was tested and treated two or three times for Lyme's disease which seemed credible since we have deer ticks in or area. The tests always confirmed I didn't have it. Others false ones for me were plantar fasciitis, bladder infections, possible bladder cancer, suspected broken wrist, possible TB or lung cancer, and several others I don't recall before Wegs was finally confirmed. Nasal bleeding for years was often viewed as due to dry winters or other problems.

[ltgangi]

Thank you for your input. I will keep after these doctors. I've dumped a few in the last couple of years. I'm one of those people that blood tests are always normal. Although I have a positive RF factor all my inflammation markers are normal. So I was very surprised that the ANCA came back positive. Only time will tell. I DO hate waiting.

[annekat]

Welcome, Itgangi. I'm a bit tired for any real advice, but I'm glad you found the forum and that you have the gumption to dump doctors who you don't feel are getting you anywhere. I also had what they thought were sinus infections and allergies for a long time, and had had allergies and, in my case, asthma and bronchitis, since mid-childhood, so when I tested positive for allergies it seemed believable, and I started allergy shots at about age 57. I finally got a WG dx when it went into my lungs at age 58. As for the c-anca and stuff, that is not always a reliable indicator, but as long as you keep having issues that aren't being resolved, keep after the docs and find the best ones you can. Blood tests can be pretty normal if your WG is sort of what we call "smoldering", and if you do have symptoms and you got the positive c-anca, I would continue to get info here on the forum and maybe get advice from the Vasculitis Foundation on doctors in your area.... visit their site and they have lists of specialists.

[drz]

Thank you for your input. I will keep after these doctors. I've dumped a few in the last couple of years. I'm one of those people that blood tests are always normal. Although I have a positive RF factor all my inflammation markers are normal. So I was very surprised that the ANCA came back positive. Only time will tell. I DO hate waiting.

For many people ANCA often does not correlate well with disease activity which is why most doctors do not view it as a good measure of how you are doing. For some of us it is useful and a good indicator of disease activity.