antibiotics

[elephant]

I went to my eye doctor today and he told me I should have my blood checked for mycoplasma. I guess he read that some Wegs or GPA cases are really a underlying bacteria infection and that 3 months of antibiotics Doycycline would put me in remission. I really think that Weg disease is different for everyone and the variables don't match with everyone. Some have very mild WG and some have it so bad that even the toxic drugs barely knock it down. I talk with my Rhuemy next week and see what she thinks. Yes, I do agree that antibiotic do help me feel better and my sinus pain subsides. I upped my prednisone to 5 mg. I was on 3.5 mg, but I was struggling. Hoping the 5 keeps me sane!

[Sangye]

I haven't heard anything about that, Elephant. If you see him again, can you ask him for the reference to that info?

I hope the 5mg does the trick for you. You might have to just hang out there for awhile longer before trying to taper lower.

[elephant]

I will! I am sticking to 5 about two weeks and then I will try to taper to 4 1/2 mg. One day at a time.

[Sangye]

I know it sounds crazy, but you might try to go from 5mg to 4.75mg. When I was first tapering below 5mg last year I had to go 1/4mg at a time. Dropping 1/2 mg was just too much. You have to use a pill cutter to cut half a pill in half, which is a bit of a challenge! Teeny tiny pill pieces....

[maria garcia]

you were "lucky" enough to finally have a positive blood test, right? i dont know if i will ever get one. right now the bones on the side of my nose ache. nothing i can do. i have another appointment in a month. i'll just deal with it until then. the med i was taking was Keflex. but i've read positive stuff about doxy. i had very mild episcleritis at one point, and he gave me steroid drops that helped right away, and it hasnt come back. i just want to get this thing diagnosed early on so i can avoid the hardcore drugs. i have total faith that my issues are mild and i can kick them to the curb easily if we can just get it figured out soon! it doesnt help that my ANCA, CRP, ESR are totally normal, and my nose looks nice and healthy, even though it FEELs like somebody whacked it. i've had similar problems with getting another uncommon disease diagnosed. i also have interstitial cystitis (bladder disease, thought to be autoimmune as well) and that mimics other conditions, and i had to fight to find specialists who really believed me.

i think my biggest hurdle is to confince a doctor (ha!) that you CAN have mild wegs that drags for a while. seems that every doc i've seen thinks that if i had wegs, it would be more severe. talking to all of you, makes me know that its not true. everyone is different, and some people progress rapidly, and some dont. makes you wonder how many wegs cases there are out there, where they drag on mildly and never get diagnosed.

If all three are negative why are you so sure its wegs? Maybe your lucky and its just bad sinus or something else relating to the nose.

[maria garcia]

i talked to a girl who goes to a top wegs specialist, and he said that limited rarely goes to kidneys, not to say its impossible, but it usually doesnt. thats why the doctors often wonder if its possibly a different disease than the more systemic type. and then there are the Anca negative people....if its not ANCA doing the damage, then what is? i've already been "shot down" twice by a top weg specialist, so its pretty depressing. as of right now, feeling like i just got walloped in the sinuses. no congestion though, just pain.

Have you thought of going to a nose specialist. If all the test have been negative it might not be Wegs.

[maria garcia]

My vasculitis hasn't quite been pinned down specifically to wegs yet but I was on Septra (Bactrim) after a biospy showed what was goign on with my eye. It took several months but it went into 100% remission and stayed there for several years without another thought. I stopped taking it when I was pregnant which caused it to wake up mildly. After having my daughter, it took a few months of prednisone plus restarting the septra to get it quiet again. In hindsight I realize it wasn't enough that time. A few months later I stoped taking it again while trying to conceive and through until my son was born. That's when the problems really started brewing big time, and then thrown in there was a refusal by any doctor to acknowledge the biopsy report from years prior. They refused to refill my Septra while I have gotten worse and worse over the last few years. I was diagnosed with other things in the meantime (all confirmed valid diagnosis - VERY severe reflux, cough-variant asthma, and sjogren's) that should have explained individual symptoms yet despite treatment they continued. Just the last few months am I back on septra and pred and doing better.

I am confident that had I never stopped the septra, my vasculitis would have stayed localized to the lacrimal area above my eye and I would not be dealing with eye/ear/nose/sinus problems today. I know this disease is unpredictable but the septra alone put me in and kept me in remission until a few months after stopping it.

Might also add that I had a very specific trigger for my diease, unlike most people. I caught a nasty head cold. I went to bed feeling cruddy but no cruddier than anybody else with a head cold, and woke up with my eye swollen shut. Antibiotics (not septra) cleared out the sinus infection but of course did nothing for my eye.

What exactly did the Biopsy diagnose your eye with. My daughter is also having eye issues and they keep saying is episcleritis but epi is soppose to go away within weeks and she has had it for 6 months!

[delorisdoe]

wegners doctors do not treat biopsies or blood tests. They treat symptoms. Infact if a patient responds to wegners treatments that can help in diagnosis. Going to an ent-a nose doctor-is one of the first steps usualy and that would be who most likely did the biopsy.