introducting myself

[makabe]

Hi, everyone

I've been lurking here for a while and was finally able to get signed up. I am a 37 yo with a several years long history of "fever of unknown origin." My doctors have been trying to find a cause off and on since 2007.

I first had a daily fever (up to 101.4 or so) for seven months in 2007. After tons and tons of tests, no cause was found and the fever did eventually go away.

The fever resumed (or so it seems) about 19 months ago. It averages about 100 degrees in the afternoon each day. In that time, I have had about 15 major sinus infections, several major ear infections, transient joint pain, itchy, tingly skin, extremely painful red eyes... Just as the doctors were about to agree that I had seronegative rheumatoid arthritis, someone ran an ANCA test which came back with slightly elevated c-ANCA titers.

I found a rheumatologist who started to talk about treatment right away. The interesting part about my case (or so he says) is that my titer was never all that high and is negative right now. My CT scans show major disease in my sinuses, but so far nothing in my lungs. Kidney tests all look good, too, as do all other inflammation markers.

I'm going to schedule a sinus biopsy today, even though I'm told it might not be conclusive (yet the rheumatologist wants it done) in case it can give us very conclusive proof that I should start MTX. I have already started prednisone and Bactrim. At this point, every doctor seems to be in agreement that I have Wegener's, but that perhaps I am a "lucky" one with mild and/or limited disease.

Any thoughts on a pattern like this? I certainly haven't willingly embraced this diagnosis, but it's soooo frustrating, as you know, to not have answers.

Thanks for reading this. I have learned so much from all of you already and am glad to be able to be a part of the conversation.

[Dirty Don]

Hi makabe, welcome to the forum...people, as you know, are very caring and knowledgeable on here...have helped me immensely already, epsecially in some of the less understood emotional areas of the disease!

Anyway, I have the same symptoms as you, give or take. WG seems limited to sinuses, which are slowly coming back thanks to a great ENT. I have a WG team here in Phx...I'm one of the lucky ones with WG, limited and nearby excellent treatment. So far, limited and now gone lung involvement, no kidneys, no fevers, and interesting sinus problems. Given the job description of the disease, I'll take it so far. Sheesh! My numbers are all very solid with only one near limits, can't remember! Basically, I'm going thru mtx and pred, now in 3nd full month of dosage, am feeling bit better, thanks to sinus surgery too.

Your Rheumy seems on top of things, good for you! I'm sure the biopsy will assure you you have WG...sheesh. I had a lung biopsy, not on purpose, believe me! It told the truth right away...Mayo was all over it immediately...they seem to like cases like this. Another sheesh!

Best of luck, keep in touch as we seem parallel...

Don

[makabe]

Thanks, Don. It's really good to hear from someone else who has a similar case. The doctors (who know WG at all) are inclined to believe things should be worse than they are -- not that I'm complaining. While they agree on the diagnosis, the latest comment is that they'd feel more comfortable with one more bit of evidence before starting the drugs. I find myself vacillating between the hope that they still don't have my diagnosis right and just wanting them to get treatment started so I can figure out what it's like to feel normal again!

I do think my rheumy is good. He just told me Tuesday, too, that a guy from the Boston vasculitis center had been recruited to the University of Pennsylvania (where I see docs) and that he was going to be "first in line" to review my case with him.

[Nancy-S]

I can reply! Woahhhhh! I'm in..I'm in! My registration went through. Yay!

Sorry....got side tracked. I just wanted to say I'm right there with you. I hold onto the hope I have not yet received the dx, but I know what's really going on. I'm so happy for the docs you've found. They sound great!

[Dirty Don]

The doctors (who know WG at all) are inclined to believe things should be worse than they are -- not that I'm complaining. While they agree on the diagnosis, the latest comment is that they'd feel more comfortable with one more bit of evidence before starting the drugs. I find myself vacillating between the hope that they still don't have my diagnosis right and just wanting them to get treatment started so I can figure out what it's like to feel normal again!

LOL, yeah, many docs aren't that far ahead of your knowledge base, always keep that in mind as you traverse this disease. So, as they help YOU determine your condition and the level of it, just keep at them!!! LOL, persistence has become a virtue!! IF they, in fact, are reasonably sure you have WG, what's wrong with starting, then stopping treatment as needs be? Just asking, I don't know. I have gone from wanting schedules and timelines to now going with the flow and being as possibly pro active as I can with WG...not trying to beat it, trying to keep it under wraps and leaving room for improvement...just an angle!! LOL

[makabe]

Welcome, Nancy!! Look how fun it is to be official! ;-)

Having just come back from yet another ENT visit, it is good to be reminded that my knowledge can rival the "experts" in this case!

[Dryhill]

Makabe, welcome to the forum. Yes it is good to be able chat, I hope all goes well for you and that your doctors can quickly decide to do something.

Jim

[Psyborg]

Welcome to the forum. I hope that you get everything straightened out with treatment in the way that will work best for you.

[Dryhill]

I can reply! Woahhhhh! I'm in..I'm in! My registration went through. Yay!

Sorry....got side tracked. I just wanted to say I'm right there with you. I hold onto the hope I have not yet received the dx, but I know what's really going on. I'm so happy for the docs you've found. They sound great!

Welcome to the forum Nancy, hope you enjoy our company.

Jim

[Thakator]

Hi Makabe,
Welcome to the forum - - and, as we are fond of saying, sorry that you need to be here. Wegs is surely no fun, but this is THE place to be if you have it.

Would like you to know also that a protracted bout of fevers like you have experienced is a common enough symptom of Wegs; mine went on for over ten months and got to the point of occuring every other day until I got into treatment. So, hopefully (if you have to get it) a Wegs diagnosis would explain this situation and you wouldn't then have to continue looking for something else that would be causing them. 'Cause those other causes are all nasty as well!

And welcome also to you, our Weggie sister Nancy, and may you find as much knowledge and empathy herein as have most of us. Ron