Hi! I am very new!!!

[Nrsepeters]

Hello,

My name is Cindy and I was diagnosed with Weg's on October 14, 11. Actually it was a partial diagnosis I guess? My P-ANCA and my C-ANCA were both positive. This week I had the CT's of my sinuses my lungs and my abdomen and pelvis.I have a follow up with my Rheumy on Nov 9th to get the results?

The symptoms that brought me to the Dr. in the first place was in my first two fingers on my right hand had numbness, pain, sores that wouldn't heal, turned deep purple when in shower/warm water and again PAIN! That was it? But now that I have been reading other symptoms and things that happen I think I may have had it brewing for 18-24 months,but...I am also a nurse so I tend to write off "odd" symptoms to other things?

Since diagnosis, the tiredness and soreness in muscles/legs is getting worse, my body feels so "HEAVY"
I am scared to death of what my future holds at this point, I hear about all the potential symptoms and medications and am not sure what to think?

Glad your all here, I will let you know what I find out? Is it possible with positive P & C-ANCA that it could be something else? Just curious???

Thanks Cindy

[renidrag]

My first symptoms were joint pain, shortness of breath (SOB) on this site, and absolute fatigue. It took a bronchoscopy for my diagnosis. From what I have read here, Anca is not always a reliable marker. Others will be along with more answers and questions. The brewing of eighteen to twenty four months of symptoms is not abnormal as WG is very hard to diagnose. Good luck and one day at a time. I am one of the lucky folks that is in drug free remission presently.
Dale

[Shannon]

Hi Cindy,
Welcome! I'm sorry to hear about your diagnosis. It can be frustrating for doctors because they know based on what they are seeing and hearing that they are dealing with WG or GPA as they are now calling it, but they need those test results to confirm it all. I had granulomas in my lungs, a saddlenose, hole in my septum, joint pain and swelling in the knees, elbows and fingers, and they knew absolutely it was WG but my lung and sinus biopsies were non-conclusive and I tested positive for P-ANCA instead on C-ANCA. It was confusing, but the docs all agreed on WG and treated as such. I too was afraid for the future and to take the drugs, but they provided a lot of relief. You will be amazed at how much better you feel. Almost six years later I haven't had to go to the next level of treatment. I hope all goes well. Please ask questions as there are so many amazing people on this forum. I just joined myself this past month and can't believe I went five years in a vacumn just having the internet to rely on for information. This is a great site and should help you a lot as you navigate your way through this. Are they starting you on Methotrexate and Prednisone?

[Psyborg]

Welcome to the site, but sorry you had to find us. You'll see everyone has varying degrees of difficulty being diagnosed.

[NicShaf]

Welcome Cindy!
I'm kinda surprised to hear with all the pain you're in that they didn't at least start you on Prednisone or something. What results are you waiting for from the doctor? When I was hospitalized last December, they put me on Prednisone pending the results of my biopsy to help with the symptoms I was having at the time. Then after the biopsy came back, they gave me my treatment options.
Wegs is a scary diagnosis, but coming here and asking questions helps take a little of the fear away. Ask all the questions you want, there are many on here that have had Wegs for years, and have mountains of advice and experiences to share.
I asked the same question about ANCA levels when I was first diagnosed. I don't think there is anything else out there that would cause elevated ANCA's.
Best of luck to you, hope to hear from you again soon that you're feeling better and on your way to recovery!

[Dryhill]

Hi Cindy,

Welcome to the forum. It is quite common to be suffeering from WG for many months before it is diagnosed, in my case I had some symptoms of WG for at least eighteen months before I was sent to hospitl for tests. I agree with Nicole in that I thought they would have started you on Pred straight away.

Good luck for the 9th and do keep us updated on how you are feeling.

[Al]

Cindy--I'm not glad you had to find us, but I'm glad you did! This is a tough and scary business, but knowledge will, I think, put you in a better frame of mind. Elevated ANCA levels almost always imply an autoimmune disease, though any specific diagnosis must be confirmed with other evidence, Since you know that you have C-ANCA, presumably it has been studied by a pathologist, so this is more firm. But it is important to note that the severity of disease varies a lot. But even more important, in my opinion, is your response to it all. I call the proper response "rage therapy", and it really does help! But first you have to know that you are among people who are rooting for you!

Al

[Al]

Cindy--

PS I forgot to ask a couple of things. You didn't say what your other tests show, but it occurs to me that leg pain might possibly be associated with kidney distress, which is common with ANCA diseases. If so, methotrexate is usually taken off the list in favor of Imuran (azathioprine). The mixed ANCA types do not mean anything regarding a specific diagnosis (there are four main ANCA associated vasculitides), but they are somewhat unusual. Just a thought: do you have asthma as well?

Al

[maria garcia]

Welcome to the family <3

[Sangye]

Hi Cindy, welcome to the group. I'm wondering why they did a CT of the abdomen and pelvis.

It might have been justified in your case, but I'm just giving a general warning: It's easy for them to overdo CTs and x-rays early on. You have to be very cautious about it and remember that Wegs is a long haul disease. The rheumy I saw at Mayo Arizona WAY over-xrayed me. There was no way it was medically necessary. I've had far too much radiation from that and others who were too quick to use it.