Positive Diagnosis Questions

[kleahy]

Hi, this is Keith from Jacksonville, FL. I have felt pretty bad for the last few months. Nasal issues and clogged ears (have tubes now) and most recently body pain and inflammation all over. I tested positive for C-ANCA and had a P-ANCA score of 319. It appears as though it could be WG. Doctors want to make sure with a nasal biopsy before they start me on treatment. However, my ENT says he cannot see any questionable nasal tissue to biopsy. Lots of crusting was removed in a prior biopsy to determine that I did not have cancer, but it hasn't come back. Any suggestions to get a firm diagnosis? They did look at my lungs and kidneys and all appeared good there so they suspect "limited WG". Can alcohol or sugar cause flare-ups? Any help is much appreciated. Thanks.

Keith

[Alysia]

Hi Keith and welcome,
nose biopsy can come false negative. I had 2 like that.
what do you mean by "inflamation all over" ?
"limited wg" is a "dangerous" defintion, as was in my case (eventhough I had lung-involvement), because there are some docs that think that no-serious-treatment is needed in such a case. remember that it must be treated. in my case i didnt get in the first years immuno-suppresants until wg became more and more "aggresive".
I hope that you have good docs, who know wg. it makes the difference.
good luck and update us.

[Pete]

Hi Keith,

Even though the docs who diagnosed me were not 100% convinced I have wegs, they couldn't provide another diagnosis that matched my symptoms (similar to yours). They decided to treat me for wegs (cytoxan, high dose prednisone, and bactrim) with the understanding that if my symptoms improved, that would validate the diagnosis. My symptoms did dissipate.

Alysia is correct in that this disease does require aggressive treatment to arrest presenting symptoms and minimize the risk of damage to currently unaffected organs. You or your doc may want to research the Vasculitis Foundation's website for a WG/GPA specialist to consult with. Also, I think there are specialists at Mayo in Tampa-St Pete and University of South Florida.

Good luck and better health!

[annekat]

Welcome, Keith. I agree with those above. I hate to see someone not get treated because no one is sure they have Wegs. Your symptoms sound pretty Weg-like to me. Which doesn't mean you have it, I hope you don't. I agree with Pete about finding a specialist and I think I saw one listed in your area on the Vasculitis Foundation site.... check this link: VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/) . I just looked and saw a pulmonologist on that list at Mayo in Jacksonville, and maybe you don't really need a pulmy, but there might be other good docs there or where Pete suggested.... perhaps that pulmy could suggest a more suitable doc for you. I personally doubt that the VF list is complete and think there must be other good Wegs docs around. And not to say that your doc doesn't know what he is doing, but maybe you need at least one second opinion as to whether you should go ahead and take meds. I think there are some on here besides Pete who did so without a definite dx and it turned out to be the right thing. Good luck, and keep us posted!

[vdub]

My understanding is that the term "limited" is being replaced with "localized". Localized would seem to be more accurate.

[windchime]

Hi Keith,

Welcome to the forum. Lots of great info and people here. Take the diagnosis of limited or localized very seriously. I've "lived"with limited Wegs for many years with no treatment. Sadly I'm in a crisis now. Don't let the docs put you off, be aggressive with your own care . Best advice I can give along with finding a doc that specializes in Wegs. Keep us posted and good luck.

[mishb]

Hi Keith,

Welcome to one of the best places to get all of your questions answered.

All of the amazing people about have given the best advice - what more could one want :tongue1:


Take care - and as always ..........

[D.B.]

hi keith sorry you are feeling bad. in my case i was given prednisone while undiagnosed and helped greatly w inflammation. nothing has helped my ears and nose yet....
i haven't seen anywhere a direct correlation btw sugar and flare ups but i had to stop drinking soda because i really do feel better when i cut back on sugar intake.

[kleahy]

Well, we have decided to start treatment based upon the ANCA data. My rheumatologist seems knowledgeable with WG. Prednisone, methotrexate and folic acid to counter the side effects for the next six weeks. I am looking forward to feeling better soon. He said my ANCA scores may not come down or flip to negative, even with remission. Is this typical or do you just stop taking the meds after you have been feeling better for a while (how do you know when the disease is in remission)? Thanks to all on this forum for the valuable knowledge and insight.

Keith

[annekat]

I'm glad you are getting treated, Keith. MTX is not one of the strongest drugs but does work and may be just fine for you; it has done well by many on here with mainly sinus involvement. If you start to show improvement you will know it is working and I'd guess that means you do have WG despite the lack of conclusive evidence.

It's hard to say when you will know you are in remission, as it is a bit of a subjective term. It may be a medicated remission, where your symptoms are under control and you feel pretty well back to normal, but you are still taking the meds, probably at a reduced level. Or it may mean you have suppressed the disease in your body to where you don't even need meds at all and can completely stop them, which you wouldn't know unless you tried it and the symptoms didn't return. I think I might be close to a medicated remission and am on fairly low doses of MTX and prednisone. If I wanted to try stopping the meds altogether, I'd have to take some time to taper the prednisone down to zero, which can be tricky, as you can't just stop it. The MTX I could probably just stop or taper the dose. But I'm pretty sure that at this point, without meds, I would not be able to maintain a remission, and the symptoms would return as a flare. I think there are some on here in drug-free remission, or who were for many years until they eventually flared, but I don't think the number is high. In any case, you should start feeling a lot better after a few weeks of MTX, and since your case seems light, you might even go into remission before long. I had a more severe case, although less severe than some, and had to be on CTX, a stronger drug, for a few months before switching to MTX. I am now doing better than I was at the time I switched, I think.

[annekat]

i haven't seen anywhere a direct correlation btw sugar and flare ups but i had to stop drinking soda because i really do feel better when i cut back on sugar intake. I know for sure that too much sugar makes me feel like crap. This may have been true before I ever had Wegs, but now that I have it, it is more pronounced. It can definitely worsen my symptoms over the course of a day, which isn't the same as having a flare, but I wouldn't doubt that it could contribute to that if too much is consumed on a regular basis.

[Jeannieinga]

I've just been diagnosed as borderline Wegener's and am looking for a rheumatologist who treats this in the S. GA/N. Florida area. My pulmonologist at Emory diagnosed me but I don't want to drive back and forth 200 miles. I'd like to find someone closer to me since I imagine I will be making frequent visits to the doctors.

[Dirty Don]

Welcome Jeannie, hmmm, a borderliner...not sure what that is as there are soooo many levels of this disease. I assume you may mean a 'localized' WG perhaps. Anyway, if you have access to Mayo in Jxville, that shouldn't be far for you. I don't know the docs there, but Mayo generally treats AIs...I use the Phx Mayo...they have made my life much better thru their skilled efforts. Also, Phil, on here, knows a multitude of WG docs, etc. - he may have better info. Also, look at the map here to see if anyone else is in your area. Best of luck to you, ask any and all questions you may have...lots of caring and good experiential info on here.

[annekat]

Welcome, Jeannie. I'm glad you found the forum, as it is the best place to be for anyone who might have WG. But I, too, question the term "borderline Wegener's"... I figure, either you have it or you don't, or they think you might but don't know for sure. Or maybe like Don says you have a fairly mild or limited case of WG so far... if so, keep in mind that can change. Maybe you could start a thread under New Member Introductions and give us more details about your symptoms, history, diagnosis or not, meds you are on, and anything else you would like to share. We are always here to listen and respond to anyone's concerns, and many of us have used this place to blow off a little steam now and then, as well! Good docs are important, too, and you could check this link : VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/) to see which known specialists listed might be somewhat near to you. For many of us, this forum is as good a source of information and help as any doctor.