Im new and Ineed some information on p panca postive and MPO positive

[maria garcia]

I have so many questions and a bad attitude doctors who is no help. My daughter was diagnosed with ppanca poistive and mpo positive she is only seventeen. I had never heard of this auto immune disorder. My doctor doesnt not want to explain anything except treat her for a eye condition which we fell is associated with the disease we will know tom. In two weeks he said we will sit an talk about. This all started with a red eye send us to a rheum, and my whole life has changed forever! Im so lost and new in this. Maybe you can help. All her other blood work came out fine but there doing a chest xray and a sinus. I think they might me suspecting Wegener's even though he c anca was not high normal range but she has had the sinus symptoms, bleeding of the nose and alot of dry cough. I was always told is allergies and im praying it is. I have been reading alot in the Internet and im overloaded with information and depression. I even read her life span can be two years. I had a mental breakdown. I need to be strong for her and im not sure how. Please explain to me a little about this disease and how the number work. And Im also trying to figure out the difference between the autoimmune disorders and why this one seems so much worse. I will appreciate any information. thank you for your time. ines

[pberggren1]

I'm so sorry to hear about your daughter Maria.

Wegener's can present in many areas but the sinuses and nose are very common.

There is a thread on here called: What the newly diagnosed need to know. Try reading through that thread.

Also go to the vasculitisfoundation.org It will have a bunch of info on Wegener's.

But for the most part Wegs can affect the joints with joint pain that can come and go, sinus headaches, post nasal drip, blocked nasal passages, crusting and bleeding in nasal passages, coughing up of blood and/or mucus, trouble breathing, loss of appetite and weight, hearing loss, loss of vision, sores in mouth, skin rashes, neuropathy, and the list goes on and on.

Diagnosis can be tough. Usually a biopsy is prefered of the nose, lungs, or kidneys if they are suspect of being involved. But a biopsy can come back negative and it could still be Wegs.

Also ANCA is a very unreliable test to determine Wegs. In some people it is a reliable marker but for most it is not. I have had Wegs for over 8 years now and ANCA was a reliable marker for me until just recently. I am C-ANCA positive but sometimes the P-ANCA creeps up as well.

Other blood tests to look for are ESR or sed rate, CRP, Creatinine, WBC.

I hope this helps somewhat. I am not a parent so I can not relate directly to what you are going through but my parents have basically been looking after me the last few months because of a flare up and a bad lung infection.

[maria garcia]

Thank you so much for taking the time to answer. I have beena mental mess. Having a doctor who doesn't answer questions. Told me to look in the inernet and I almost died when Iread 2 years of life if not treated. I see you have been coping with this for several years good for you. My daughter started with a red eye.And if the conclusion is vasculitis then he mentioned chemo and cortisone. I feel like noone I talk to knows about this disease. she is so young Iwould give my life to suffer instead of hers Iwish it would work that way.

[maria garcia]

What are considered high number for p Anca ? My daughter has is having another blood work done and she has been drinking antibiotics do you think it can effect the results. Ive hd mixed answers.

[pberggren1]

Where do you guys live Maria? The main Vasculitis Centers are: Mayo Clinic in Rochester, MN, Cleveland Clinic in Cleveland, OH, Boston University in Boston, MA, Johns Hopkins University in Baltimore, MD, and there is one in California somewhere and one in Salt Lake City, Utah. I think there is also one in Durham or Chapel Hill area.

What I am getting at is that if it is Wegener's one has to make a big effort to get to one of these places or at least have a better doc that is will to consult with one of the Wegs Specialists at one of these centers. And if you can right now go to one of these centers now for diagnosis.

[pberggren1]

What are considered high number for p Anca ? My daughter has is having another blood work done and she has been drinking antibiotics do you think it can effect the results. Ive hd mixed answers.

I'm not sure if antibiotics will affect blood tests. But if she just started them I would think not. But maybe it could affect the White blood count or ESR or CRP, but I am just guessing here.

ANCA results are given two ways: As a titer number like 1:40 or a just a straight number like 5. Mine are always just given as a straight number. So I think that anything over 6 to 8 and higher would be positive and a 10 would definitely be positive. Mine in the past have been as high as 40. But I do not know what a high or positive titer would be.

[JanW]

Maria -- I think it would help us to know where you are located so that we could direct you to a vasculitis center. Even if you cannot travel to one, the experts can consult with your doctor free of charge.

There is some good information on the internet about WG, but bad information as well. For instance, many of us went years undiagnosed (I think about five in my case) and we didn't die. But the important part is to get treated. You should go to the Vasculitis Foundation's website and see what they say about p-ANCA. It is often associated with Churg-Strauss syndrome, which is probably the second most common vasculitis (the first being WG, but they are all rare). Don't worry, many of the vasculitis conditions are treated the same -- with steroids and a chemotherapeutic agent such as methotrexate or cytoxin.

It sounds to me like you really need answers and you need them quickly. I'm sure others will be along this morning with their thoughts. Hang in there because vasculitis is treatable, and your daughter can live a long and productive life with it.

[NicShaf]

Maria,
I'm sorry to hear about your daughter, she is so young to be afflicted with this disease. However, like Jan and Phil mentioned above, Wegs is treatable, as long as you get your daughter treatment as soon as possible, she has a very good chance of recovering, especially since she is so young. I have about 10 years on your daughter, I was 26 at diagnosis, but my doctors reassured me that my age was on my side and my body could take the treatment well and recover.
It would be helpful to have a doctor who answered your questions, we had a similar Rheumy in the beginning, and it made a huge difference to get someone who would listen and answer any questions me and my family had. I hope you can either find a better doctor or have your doctor consult with a Wegs specialist at one of the centers.
I have C-ANCA, and I know that any ANCA count with this is abnormal. I'm not exactly sure if it's the same for P-ANCA. Normal is considered below 1:40. When I was hospitalized in December, mine was 1:360. It went down when I started steroids to about 1:120, and now is at 1:40 after about 4 months of Cytoxin.
On another note, you will read on this site about many who have achieved remission and maintained it for many years, some 10-20 year spans. There is no reason to fear that your daughter is going to die in two years, although I completely understand where your coming from. My husband and I did the same thing, read too much on the internet, and thought I was going to die. This site helped me a lot in coming to the realization that people live long and prosperous lives with this disease. We all may have to tweak our daily routines a bit, but this disease is manageable and survivable.
Best of luck to you and your daughter. I hope you get some answers from your doctors soon. Feel free to ask as many questions as you can think of, everyone here is very knowledgeable and know firsthand about Wegs.

[maria garcia]

I am very appreciate of all your answers. Ilive in Miami FL and my daughter is seeing a rhema.here locally. He is soppose to be very knowledgable in his field but no matters. Im very scarred right now. Has anyone had scleritis of the eye? My daughter is going back today but there corelating this with her PPANCA +. How would I know when this disease is in remmision> Do the panc test come out negative?Has anyone had False positive? Im sorry about hese questions my daughter does not want to answer anything. He said he is only there to treat the Dx. Very rude but bcse of my insurance I am stuck on my own finding infor. from the internet.

[maria garcia]

NIcole you have been an ANGEL, thank you for your kindness and knowledgable information. I feel so much better. I think Im just overloaded with internet information.I have read horrrible things llike lung hemmoraging etc. I had never heard of this immune disorder. I always heard of Lupus scleroderma Crohns but not P PANCA this is why im so confused. Is it true that this auto immune is the worse one to have? What has been your diagnosis so far. Its looking like my daughters is Scleritis of the eye. which is what took us to see the Rhemo. My email is INZINES at aol.com. If anyone in this forum wants to write to me. I wish this was happening to me and not my daughter.