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

[Sangye]

Hi Makabe, welcome to the group! (And welcome to Nancy, too!) I hope you can get a clear diagnosis soon, but like you said sinus biopsies are often inaccurate or inconclusive. The most important thing is to get a doctor who really knows Wegs-- not just a Wegs rheumy, but also a Wegs ENT, etc.... Since you're in Pennsylvania I suggest seeking treatment at JHU (or Cleveland Clinic, whichever is closest).

Beware of the labels "mild" or "limited." Wegs can do anything it wants without warning, which is why you need to have great docs lined up before/in case anything heads south. The husband of one of our members (Stephanie) went from sinus-only involvement to massive, life-threatening disease in just 2 weeks.

[vdub]

Hi, Makabe and Nancy! Yeah! Looks like the forum might be back on track after a little vacation.

My situation also started with sinuses. My ENT wanted to do surgery to open up my sinus channels so they could get more air. I think that surgery was number 4 or 5, so I was no to keen on getting it done and was less than optimistic that it would do anything for me. I went ahead with it anyway -- I thought, what the heck, can't hurt. As it turns out, it was the absolute best thing that could happen. Now when I'm having sinus issues, I can sniff a little an feel air go all the way through my sinus. I can actually go to sleep at night and breath thru my nose. Best surgery I've had......

[Al]

Welcome, Makabe, and Hi, Nancy! And thanks to both of you for being such good sports about being involved with this scurvy crew!

"WG" actually covers a whole range of diseases, Makabe. Some, in fact, are ANCA negative, or mostly negative. The variables are: granulomatous inflammation, vasculitis, and presence of ANCA. Along each dimension, there is wide variation. You are indeed luckier than many, as you do not have lung or kidney involvement. Still, it is a nasty disease, and nothing to sneeze at (so to speak), in all cases. It sounds like you are in pretty good hands. Keep us apprised about your progress!

Al

[Dirty Don]

being such good sports about being involved with this scurvy crew!Al

Arrrggghhh, matey...you 'cusin' me of scurvy?! Arrrggghh...sinuses? yes. lungs, maybe. kidneys, gimme a pint! but, scurvy? you pirate!!!!!! LOL...

[Al]

Arrrggghhh, matey...you 'cusin' me of scurvy?! Arrrggghh...sinuses? yes. lungs, maybe. kidneys, gimme a pint! but, scurvy? you pirate!!!!!! LOL...

To be more precise, I guess rickets would be a closer side effect of WG than scurvy. Also, my beard is far from black these days. But you do make me laugh, this groggy morning--Arr-Arr-Arr....

Al

[annekat]

Welcome, Nancy and Makabe. I started with one horrendous ear infection followed by a couple of years of recurring sinus infections, hearing problems, and off and on joint pain, then some bad lung involvement which led to the suspicion of Wegener's, which was confirmed by a nasal septum biopsy. But in my case, just an occasional fever during the bad lung stage, not a protracted period of fevers at all. And like some lucky others, no kidney involvement so far. Lungs cleared up after 2 or 3 months of Cytoxan and high dose prednisone, now 8 months later tapering both and still dealing with sinus and hearing issues, but much improved. A little joint pain creeping back in but mainly in joints that I use a lot as opposed to random or roving pain. Every case of Wegs appears to be a little different!

Anne

[mishb]

I also would like to wish you both (Makabe and Nancy) a big hello and welcome........and today a very happy christmas.

I started out with roving joint pain and then sinus infections that wouldn't go away which then lead to bright red eyes and deafness in my right ear. No lungs or kidney trouble.
I had the sinus biopsy and one very small granuloma was found and thus my diagnosis of WG. I was on pred only until an official diagnosis and then put on to MTX as well.

Take care of yourselves and I hope 2012 will be a much happier, healthy one for you

[Chris G]

Welcome Makabe & Nancy! My wg is similar to yours makabe. Ears, sinuses (w bad sinus headaches), nose, eyes, throat, and of course terrible fatigue. I've had wg for at least 4 years, probably longer - so far no lung or kidney involvement. Fingers crossed, it will never happen. Good luck to you !!

[Nancy-S]

Thanks! Merry Christmas to you, too!

We all present differently, but so much more alike then is realized. Many of you can (already have...actually) write my story , without asking me a single question. I'm glad to have your examples of strength, and hope I can be half as brave.

Thanks for the warm welcome. And thanks to Makabe for letting me share your thread.

[NicShaf]

Welcome to the group! I hope your docs can find some more answers for you soon, and you can be on your way to recovery.
As a couple people said, biopsies often come back inconclusive, especially sinus ones. I had lung and sinus done, and both came back inconclusive; but I was still diagnosed with Wegs based on the clinical evidence.
Adjusting and accepting the diagnosis if difficult at first, but it will get easier with time. Hang in there...and ask questions whenever you have them, the people on this forum are some of the most knowledgeable around, they'll help you though the forest:wink:

[Al]

...they'll help you though the forest.

You know, Nicole, crummy people get an unfair rap. As any Hansel and Gretel will avow, crumbs cn be incredibly useful. (If you want to call me a great crumb, I would feel honored.) And we all need a lot of help traversing the sylvan wonderland we know as WG. Also, in terms of your metaphor, it is important to remember that there are many different trees in this Big Wood, and many odd, potentially dangerous critters. It is not helpful to characterize the place by to tight a description.

Al

[NicShaf]

You know, Nicole, crummy people get an unfair rap. As any Hansel and Gretel will avow, crumbs cn be incredibly useful. (If you want to call me a great crumb, I would feel honored.) And we all need a lot of help traversing the sylvan wonderland we know as WG. Also, in terms of your metaphor, it is important to remember that there are many different trees in this Big Wood, and many odd, potentially dangerous critters. It is not helpful to characterize the place by to tight a description.

Al

Hmmm, point taken, how would you suggest we characterize WG? Would it have been more helpful to say "the wonderful people on this site will help you set up camp and teach you as much as they know about the wildlife of Wegs"?...Wild Life pun intended:)

[Al]

Hmmm, point taken, how would you suggest we characterize WG? Would it have been more helpful to say "the wonderful people on this site will help you set up camp and teach you as much as they know about the wildlife of Wegs"?...Wild Life pun intended:) Perhaps "crummy", in both senses, Nicole. For sure, it is a no-good disease, except that it can direct our wonderings in productive directions. Personally, I have learned a huge amount about the immune system, how the body works, how the medical-industrial complex operates, and my own place in the universe. Besides, I've made some really wonderful friends.

Al

[Widthofacircle]

Perhaps "crummy", in both senses, Nicole. For sure, it is a no-good disease, except that it can direct our wonderings in productive directions. Personally, I have learned a huge amount about the immune system, how the body works, how the medical-industrial complex operates, and my own place in the universe. Besides, I've made some really wonderful friends.

Al
Al
You are spot on (as we Irish say). Wegs made me wonder and learn about the immune system, most of which I learned on this forum but in the proces taught me that even though we are all minute in terms of the universe it is our collective human feelings and intelligence that makes us such important beings to loved ones, family and friends
Brendan

[Al]

Al
You are spot on (as we Irish say). Wegs made me wonder and learn about the immune system, most of which I learned on this forum but in the proces taught me that even though we are all minute in terms of the universe it is our collective human feelings and intelligence that makes us such important beings to loved ones, family and friends
Brendan
Yes, Brendan. This is important. We can, and should, consider this disease at the molecular level. Yet, the intricacies and complications of this kind of study can give us a reductionist migraine. So we can, and must, I believe, also think of of WG in the human sense: what it means to be a living, loving, and productive members of families, communities, and, for that matter, the arc of the universe.

Al

[Widthofacircle]

Yes, Brendan. This is important. We can, and should, consider this disease at the molecular level. Yet, the intricacies and complications of this kind of study can give us a reductionist migraine. So we can, and must, I believe, also think of of WG in the human sense: what it means to be a living, loving, and productive members of families, communities, and, for that matter, the arc of the universe.

Al
Al
Correct me if I am wrong but I think we are saying the same thing here
Brendan

[Al]

Al
Correct me if I am wrong but I think we are saying the same thing here
Brendan
Completely, Brendan. Completely.

Al