Question about ANCA scores

Hi! Thanks for the reply. It's not my daughter that has It, but me. My pr-3 is at 9.6. It was negative 4 months ago. I'm just confused as to why it has appeared now, when C-ANCA and P-ANCA is now negative. The scores have flip flopped. Understanding these lab results is above my level of knowledge.

It's awful that he has Wegener's at 9 years of age. I was diagnosed at age 61, now i'm 69. This justs shows that it can appear at any age. I've been sickly all my life, sinus infections and aching, sore bones. I probably have the world's record for having sinus infections. I do hope he gets better. Make sure he eats well. Vitamins have helped me. You might ask his doctor about vitamins. My finger nails broke off to the quick and I started taking Hain, Skin, and Nails vitamins. Within three months I noticed a different. I also take a multivitamin, a eye vitamin and others. Keep in touch.

Thanks for the reply Melvin! Not thrilled with the positive result, and still don't understand what it means, or if I should be alarmed. I have read that some people always have a high reading, but are in "remission". I don't know. Anyway, here's my story: Two weeks before being dx'd with GPA and hospitalized, I was a happy, health conscious 54 year old enjoying my family and biking in Colorado. Came home, got sick and tested positive for the flu. The cough got out of hand, so we went to the ER. Dx'd with pneumonia which was actually wrong, I had blood in my lungs. Hospitalized on the weekend, which is never good. Had to deal with the eager interns. Looked under the sheets at my leg one night and found my leg swollen to 3 times it's normal size...blood clot. By the time the surgeon was consulted, he told my family that he wasn't sure he could save it. 😳 But, by God's grace and skilled hands, he did and its now fine, just some nerve damage. Had to give me blood thinners due to the DVT, which made the bleeding in my lungs worse. Was on the vent twice in ICU, had an IVC filter placed to prevent clots from entering my heart, 6 units of blood, 4 units of plasma, plasmapharesis, and my first round of Rituxin during my 31 day hospital stay. Left the hospital in a wheelchair and had to learn how to walk again, due to the muscle atrophy from being in the bed so long. Luckily, my husband had accumulated PTO and was able to take an entire month off to help me in the rehab process? So, happy to be alive and doing well at this point. I'm glad to have someone to talk to that actually has some knowledge!

Hi jac08

Actually it was 2012 not 2010 when I was first diagnosed with Wegener's. Here is my story:

I was first diagnosed with Wegener’s Granulomatosis in 2012 when I was 55 years old. Prior to the onset of Wegener’s, I was in excellent health other than a slight persistent cough that had been going on for about 6 months after I got back from a 2-month business trip from Jan thru Feb of 2011 to the Czech Republic.   I had several visits with my doctor who always said my lungs were clear and was giving me occasional antibiotics and the cough went away.  Around January of 2012 my sinuses starting acting up to the point my teeth were hurting and was having a sinus headache due to the pressure. My general doctor prescribed several different antibiotics, none of which were working.  After requesting to see an ENT doctor, he continued to prescribe different antibiotics which also did not work but finally gave me some steroid medication that somewhat relieved the sinus infection. I was still having symptoms of a stuffy nose, crusty nose and an occasional nose bleed which he attributed to a possible allergy. Then on Easter Sunday while my wife and I were singing in the choir at our church, I felt extremely faint and almost passed out. The feeling only latest a few minutes and we stayed for fellowship after the service. When we got home, I told my wife about the incident who convinced me to take my blood pressure. Being at 81/45, she took me to the emergency room to have it checked out. By the time the ER doctor had seen me, my blood pressure was back to normal. He ran some blood test that came back OK. From what I described what was going on with my sinuses, he decided to run an X-ray on my lungs. This seemed strange to me at first since I have been seeing doctors who were all saying my chest always sounded clear and I had no coughing or signs of lungs problems at this particular time but I agreed to do it anyway. When the X-ray came back he said he saw something he did not like so he ordered a CAT scan as well. The CAT scan showed some lesions in my lungs which he instructed me to see my regular doctor to refer me to a specialist. My doctor gave me 2 names of pulmonary doctors. The first one on the list could not see me for a couple of weeks so I called the 2nd one who was able to see me within a couple of days. When he saw the CAT scan, he immediately recognized it as Wegener’s Granulomatosis. He told me I was the patient he had been looking for as he had an interest in the disease and that I had classic textbook symptoms. He did do a lung biopsy and some other tests to rule out TB and cancer before he made the final diagnosis. Blood work at the time indicated I had a SED rate of 130 which should be under 20 and my PR-3 antibody count was over 100.

Looking back, I am extremely fortunate and if anything has greatly strengthened my faith in God. To me, too many things have happened in a structured order to convince me otherwise. I believe the key to this disease is to have an early diagnosis and to keep on top of identifying key symptoms occurring before a relapse plus doctors who are knowledgeable and are proactive about treatments. Reading posts on this blog makes me realize just how lucky and blessed I am in that I have very few of the problems that a lot of people go through with this disease we have. My heart goes out to those who are truly suffering and the hardships that it brings with it. I am also very fortunate to have a very supportive, loving, caring wife watching over me plus a very supportive boss and a very good company insurance plan through which I would not be able to afford otherwise. Although I have this disease, have had a couple of relapses, I have never been as happy and content with my life as I am now as it puts a different perspective on what things are truly important in life and not some of the little petty things a lot of people seem to get caught up in. 

MelvinS