New Member - Very Worried

[gerontologee]

Good Morning!

I am new to the forum and I've been reading many of your posts while I was waiting to be approved.

I was told this Tuesday that I had a positive c-ANCA test by my Rheumatologist. I have ulcerative colitis (diagnosed in March this year), and I was also told this Tuesday that I have fibromyalgia (even the Rheumy thought it was arthritis).

When he initially told me that I had a positive c-ANCA test, he skipped over it very quickly and continued to discuss the other tests. When he was finished, I asked him to explain what that particular test meant. He gave me a very quick explanation about neutrophils and the cells, etc. He never once mentioned Wegener's since I "didn't have any active symptoms". He asked me several questions like, "Is your nose runny with blood? Are you coughing up blood? Are you having any kidney problems? Do you have any skin lesions? Do you get winded easily?"

I had to find out myself in my car on my internet capable phone after the appointment what could happen if you test positive.

I've also read that detecting this early is a good thing. I've also read that the medications for Wegener's are kind of nasty (hard on your body). I can see not wanting to treat me because of that, but what's better? Letting me go until I have a flare that can cause damage? I've also read that if you test positive, it's active in your body.

Oddly enough, I have a friend who got married on my birthday last year (July 11th). By the middle of August, she was in the hospital about to die. They didn't know what was wrong with her. They finally diagnosed her with Wegener's. She had a trac tube at that point, and she's had severe kidney damage. And she is still having breathing problems. They finally released her in March.

I discussed my positive test with her and she couldn't understand why he wasn't treating me. She recommended that I question him about that and request a timeline for future treatment. She also said that if it doesn't add up in my head, to trust my gut and find another doctor. Trust me, I don't want to take these medications if I don't have to, but what's better? There's no other alternative and I'll do what I have to do.

I have four children ages 15, 13, and 6 year old twins. I just got remarried in October last year. I'm about to graduate from UNT with a bachelors in Gerontology with a minor in Rehab and Accounting. I've finally reached a place in my life where things are really good. It's hard to stay positive with the Ulcerative Colitis and the pain from the Fibromyalgia.

My biggest wish is for the members of this forum to tell me that there's nothing to worry about. In fact, I would love it if you all rolled your eyes at reading my post and thought to yourselves, "What a noob." So if that's the case, just let me know. I may be jumping the gun and worried for nothing.

Thank you all in advance for reading my post.

[Jack]

Hi and welcome to the forum. I'm sorry you are feeling so worried, however, a +ve ANCA test result is a very long way from being a complete diagnosis of Wegener's. In fact, ANCA results are increasingly questioned with some patients showing +ve and others _ve results. The only true test of Wegener's is a biopsy result from affected tissue the shows the presence of granulomas, but even this result is not always available. In its absence, diagnosis is made by the sum of probabilities, often using the BVAS method (Google it ). This involves assessing several different symptoms that you might be showing and then adding together a score given to each.

The fact that you know someone who has Wegener's may even make it less likely that you have it yourself! Almost no one one here has first hand knowledge of someone else with the disease.

I think you need more positive test results before starting out on the treatment route. You are right in thinking that the disease can kill you if untreated, but the drug side effects can also be horrendous. I myself am almost housebound due to cumulative drug side effects over the past 25 years of treatment.

Hope your diagnosis will soon become more clear.
Regards,
Jack.

[Sangye]

Hi, I'm glad you found our group! I don't think you're worrying for nothing, and I'm proud of you for taking your health into your own hands.

My antennae went up when you said you were just dx'ed with UC, FM and also have a (+) ANCA. Like Jack said, a (+) ANCA alone is not sufficient proof of Wegs to start treatment. However, Wegs can affect any tissue or organ in the body and often masquerades as FM. I've also known people with Wegs who were dx'ed with UC but when a biopsy was done it was found to be Wegs. (Some of them had no idea they had Wegs, while others knew they had it, but didn't think it was affecting their GI system)

There are more "classic" presentations of Wegs like sinus problems, difficulty breathing, etc... But with Wegs there are no rules.

If it were me, I'd find a different doctor. It sounds like that doc gave you the medical mumbo-jumbo answer instead of flatly talking about Wegs. Most non-Wegs specialists have no idea that Wegs can affect the GI system. I'd insist on a biopsy of the UC lesions, and I'd make sure those pathology slides were read by someone at a major university or hospital (ie, not just a local hospital).

If it's "just" UC, you can treat that very well with holistic treatments and avoid the harsh medical treatment. Lots of info on the internet about it, but I suggest if you go down that road that you find a holistic physician to oversee such treatment.

[gerontologee]

Jack and Sangye,

Thank you so much for responding and your valuable input! I really appreciate you taking the time to talk to me.

It's sad (but SO extremely helpful) that strangers are more forthcoming with information than my own doctor. For that I am so grateful.

I contacted the Vasculitis Foundation to see if they could recommend a new doctor. I was surprised to see that they recommended someone in my current Rheumatologists practice. Part of me cares what my current doctor would say if he saw me seeing someone else, but another part of me doesn't care. Also, last night I found a doctor from UT Southwestern (a premier hospital and medical school) that specializes in Vasculitis.

I didn't know that WG mimics FM. That's good to know. Also, everything I read says that WG can affect the whole body, but tends to really affect the kidneys and respiratory system. I wonder if this is why my UC medications aren't really working?

Sangye, if they were to do a biopsy of the lesions in my colon would that be another colonoscopy? Now that I type that I'm thinking so. Why go laproscopically through my gut? I'm wondering if they test for WG as a protocol when sending biopsies to pathology?

Anyway, would you go see the other doc in my current doc's practice? Or would you go to another location to see the other doc? Again, thanks to you both for your help.

[Jack]

Seeing another doc should not be a problem and if they are in your current practice, that might even make it easier. A true professional will not object to you seeking a second opinion, especially if you voice your concerns about Wegener's. I've even done it myself over diagnosis of a lung problem. I remember approaching the subject with some trepidation, but it was no problem and my consultant made the referral to a doctor at another hospital without question.

As Sangye mentioned, there are no rules where Wegener's is concerned and everyone on this site has a different set of symptoms. I suspect that many of these are not fully documented or well understood by the medical profession. This is definitely a minority disease!

[Sangye]

I agree with Jack-- ask to see another doc.

Sometimes they culture a biopsy specimen if it looks infected. In your case, a pathologist would describe what the specimen looks like-- cell types, broken blood vessels, etc.... There is a particular pattern associated with Wegs. I think it can occur with other conditions, too, but if you have (+) ANCA and symptoms plus characteristic biopsy findings, they call it Wegs.

[JanW]

You're in good hands here. My antennae also went up when I heard you were having other symptoms that can be wg in disguise. I always tell people that I was 'lucky' that I developed a saddle nose because it was plain the first time I saw the rheumy that something was really wrong although I had no significant nasal crusting or sinus issues. Readings on ANCA and P3 were positive and I had subglottic stenosis, which is what it sounds like your friend has as well. I'd get that second opinion in your doc's practice, if I were you.

[talentx7]

My son had a positive ANCA test 2 years ago with no other symptoms but arthritis in major joints that his pain would last 3-4 days. His Dr. played around with the word "WG" but we were hoping that wasn't the case. Last month was the first time he had any other involvement which landed us in the hospital. They did a kidney biopsy and a sinus biopsy to confirm the wegeners, but they didn't get the results to be 100% accurate. But they are sticking with WG because they said "Carters body didn't read the book on WG yet!" and "If it looks like a duck and quacks like a duck, its a duck."

[elephant]

I too would get a second opinion and see one that is recommended from the vasculitis foundation. Mostly likely you don't have it, but I was thinking too about the intestines and aches and pains disguised as Wegeners disease. That is how mine started at age 12.
So glad you posted your story we are here to help.

[Hammy8241]

Welcome, I’m also new to this WG lark and not able to pass comment but the support given here is great. Hope you resolve your quandary quickly.