still uncertain in ohio

[kdjaxn]

Hello,

My updates so far- positive p anca, negative c-anca, negative mpo and p3 antibodies. Urinalysis abnormal, chest x-ray normal. High esr, low crp. So confusing, any thoughts?

[mrtmeo]

It does happen that sometimes people are p-anca with pr3.
The main difference is that with pr3 there is usually granulomas and with mpo there are no granulomas.
Treatment is usually the same.

[John]

Sorry I cannot keep up with all the P3's, anca, etc. . I guess I should because it is my life on the line. But I have total faith in the dr's I am seeing and I am sure they will tell/ inform me if something is not right.Right now I appear to be in remission or at least feel like it.
Where in Ohio are you located? I am in N Central Ky and have some awsom dr's in N Ky and Cincy.

[kdjaxn]

Sorry I mean there were neither mpo or pr3 antibodies, but panca is positive. I live in greater Cleveland. Thanks!

[Pete]

Hi KD,

You might want to have a conversation with your doc.

In what way is your urinalysis abnormal? That could be symptomatic of many conditions.

A high ESR is an indicator of a non-specific inflammation that may or may not be associated with wegs.

How are you feeling? Any other symptoms such as fatigue, night sweats, shortness of breath, hearing issues, joint pain? These are some of the things that go with wegs.

Who are you seeing at the Clinic? Alexandra Villa Forte (my doc) and Carol Langford in rheumatology are among the best in the world for Vasculitis care.

Good luck.

[Debbie C]

I'm going up Tuesday morning,Anyone else going to be there?

[Pete]

I'm going up Tuesday morning,Anyone else going to be there?

Nope. Next appt is in April. I hope that's after it's done snowing!! ;)

[kdjaxn]

Hi Pete,

I saw a rheumatologist after getting the p-anca positive thing, it's Dr. Johnny Su. I like him. The anca was measured after the ENT saw nasal crusting/bleeding (crusting started one year ago) and the last few months I've had extreme fatigue, muscle/joint aches, shortness of breath, night sweats, terrible headaches. So Johnny Su ordered urinalysis and chest xray. Urine had microscopic blood but NOT protein as would be seen with kidney disease. Chest xray was normal but I think some breathing tests should be done as Dr. Su said would be done if chest xray was normal, so I may message him to get that.

Dr. Su doesn't think I have vasculitis, possibly systemic Scleroderma (I already have the skin kind- he thinks it could be the organ kind- panca would be positive in the organ kind, but not in the skin kind. Supposedly there is no connection or progression from skin to organ but he'd like to rule it out.) The other possibility is Lupus. Not really having lupus but having traits of it because my sister has it (the skin kind) and it's hereditary I guess? Don't really have symptoms of Lupus though. So once Dr. Su got the abnormal urinalysis (but not yet indicative of kidney disease), he's ordered another urinalysis in one month on top of other blood tests he had already ordered to see if there's any change in anca or urinalysis.

I had a sleep study to see if the fatigue was from apnea. I'll get those results soon.

So I can't do a whole lot right now, just researching stuff, anxious and was just curious if anyone had the wacky test results I had. Positive Anca but no antibodies in sight. Just strange.

[Pete]

Hi KD,

Sounds like you have a doc who's willing to investigate further. Hope he gets you dxed soon so that you can start getting well. Let us know how it goes.

[kdjaxn]

Thanks everyone

[gigi.palumboshatz]

I also live in Ohio ; Cincinnati ! Wow! Finally another person who lives here! I was recently diagnosed with this awful thing. I can't wait to be normal again!


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[dawncelest]

Hi :) i have "overlapping " systemic lupus with relapsing polycondritus and now a firm wagners diagnosis. . My pulmonologist and rheumatologist knew i had vasculits in my lungs / airways from my first trip to the ER 3 years ago, that when i became really sick all of a sudden. . About 6 months after that i was diagnosed with lupus because of i developed joints pain, cartilage loss in large joints tenosynovitis, constant shortness of breath ,fatigue along with several constant positive and abnormal blood tests including cardiolipin antibodies that are exclusive only to lupus and or APS . Meanwhile my left ear felt like it had a chronic ear infection and no matter how much antibiotics and medrol packs i took the pain and pounding would always come back. I was also having extreme pain and redness in the top of my ear and eventually the cartilage starting thinning, reabsorbing and forming little hard nodules :/ that's when i was firmly diagnosed with relapsing polycondritus witch is really rare but is an autoimmune disease that has a lot of the same symtoms associated with SLE but the pattern of cartilage loss is unique only to polycondritus. So my point is a lot of systemic autoimmune diseases present with very similar symptoms and even lab results. Unfortunately sometimes only time as you developed more symptoms of what is definitely going on and a lot of times unfortunately you really can have several things going on at once. Fortunately most of these diseases and all treated with the same immunosuppressives and infusions with of course some specifically intended to treat certain disease "on label" but have been found to help others "off label ". hanging in there and hope you're getting great care xo

[John]

Do you have a good Rumatoligist? I don't want to sound unsupportive but I don't think we will ever be normal again. I am happy when I am in some sort of remission, but always on my mind that the WG comes back, sometimes worse than other times.
Keep me informed on how you are doing.