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NicoleB
04-02-2011, 01:39 AM
as some of you know, i am not yet diagnosed, but wegeners has been the suspicion, and i have many mild symptoms, just no positive biopsy or blood test....

anyway, my symptoms have being going on a year and a half, and even though infection has been pretty much ruled out (why would somebody have an infection that comes in goes for a 1.5 years in a healthy person, right?) anyhoo, i've noticed when i symptoms get more accute (sinus, ear, nose pain) i seem to improve a bit when i take antibiotics. it takes the edge off. i know its not curing the underlying problem but it seems to help

i know bactrim has been used succesfully in wegs, and i've been reading studies about how it can help induce remission in localized cases, and even prevent relapse. now i'm reading that some cases of sarcoidosis (which is similar to wegs, causes granulomas and inflammation) have been cleared up with long term antibiotics alone. some doctors even say they help with RA and thyroid autoimmune issues. the idea is that long term bacterial presence can irritate and overexcite the immune system, particularly Staph (in wegs) and mycoplasma in other diseases.

i know its all newish studies but interesting anyway. any weggies find that antibiotics seem to help? and i dont mean the infection-preventing action, but on their own.

Chris G
04-02-2011, 02:59 AM
I've wondered about this same thing for a long time, because antibiotics DID help early on in my disease (06-08) - before I was diagnosed.

When you present to a doctor with sinus pain & pressure, ears that won't pop open, red, puffy eyes, etc., you obviously have a sinus infection, right? In a 2 -3 month time span, I was put on 5 or 6 antibiotics. All my symptoms would clear up WHILE I was on the antibiotics, but literally, 2 days after ending each round, everything would return - and return worse than before. In 2007-08, one of my worst symptoms was scleritis in my eyes. Antibiotics would clear them up almost immediately. Although the eye specialist I was seeing suspected AI diseases, he did put me on low dose doxycycline for a couple of months, which worked to keep my eyes from flaring. I asked him why, and he cold only say that perhaps some antibiotics had anti-inflammatory components to them.

So, while I don't have an answer as to why they work with mild wegs disease, I do believe that they do, and I would also love to know why.

Nicole, if you do have wegs, the path of your disease seems to be following mine almost exactly - your symptoms seem to be where mine were in 2007-08. Like you, I did all the research myself, and I knew that I had wegs, and yet no one would believe me, or diagnose me. In March of 08, my disease went quiet, and didn't re-surface until June 2010. It puttered along all last summer, slowly getting worse, until November, when it was so bad, that I was finally diagnosed. I feel your frustration! And I hope you find some answers soon!

NicoleB
04-02-2011, 03:08 AM
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.

Chris G
04-02-2011, 03:40 AM
My ESR was always normal, and still is to this day. No explanation for that, except that our bodies are all different. ANCA was positive several times in 07-08, and as soon as the disease went quiet, the ANCA came back negative. My ANCA was positive last summer, and remains so each time they've check it. So for me, the ANCA seems to be a good indicator of active disease. But, I do believe that there are many wegs patients who don't have positive bloodwork ever! Keep in mind that I'm P-ANCA positive (MPO, not PR3) - this is NOT typical of wegs, so I'm an oddball there as well. No one ran a CRP on me until last year, when it was only slightly elevated.

Even as recently as last October, the local rheumy told me the same thing you're hearing. He said that if I had wegs, I'd be a lot sicker, and that it would not have gone away for 2 years and then suddenly returned. I'm still angry about it to this day (yeah, I need to let it go already). This is why having a wegs specialist is so important, because they do recognize the unusual courses the disease can take.

I almost hesitate to say this, but I feel you should be more realistic about being able to "avoid hardcore drugs". When/if you are diagnosed, it will be because your disease has progressed enough that there's no denying that you have wegs. I don't believe that we can avoid the drugs that are necessary to quiet the disease. And I don't believe it's possible to pro-actively "stamp it out" before it gets bad. It's not like an infection that you can jump on early with antibiotics, and cure it away. There is no cure, just management, and if we're lucky, remission. I hope I said that gently.

NicoleB
04-02-2011, 03:59 AM
i see what you're saying. i mostly meant i'd rather be in the methotrexate group than the cytoxan group if you catch my drift. you know, catch it early before my lungs (or possibly kidneys, even though they're fine right now) fall apart. so far my lungs seem good, just occasional chest tightness but no coughing or gunk.

Chris G
04-02-2011, 04:39 AM
Ok, yeah, I got ya. If it's any consolation, many here believe (and so do I) that those of us who have "limited" or "head and neck" wegs, don't necessarily have lung and /or kidney involvement. There's no straight-line course the disease takes with everyone. In other words, it does not necessarily start in one place, and automatically spread to other areas, if it's not controlled. That's good news/bad news though, because "limited" wegs is more difficult to put into remission - probably because they reserve the heavy hitting drugs for those with life threatening wegs. When I was diagnosed, I thought, great I'll take the mtx and feel better in a couple months, go into remission, and hope for a long remission. Four months later, the mtx is not working. I'm nowhere near achieving remission, we're adding another drug, and I've had to increase my pred slightly to 20mg. I'd hoped to be completely of pred by now. The frustration continues even after diagnosis. I know that's not what you wanted to hear. Sorry.

NicoleB
04-02-2011, 04:47 AM
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.

LilyPony
04-02-2011, 05:34 AM
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.

Chris G
04-02-2011, 05:57 AM
Nicole, what were your eye symptoms? And what did they biopsy? I had many eye symptoms in 2007-08 - episcleritis, scleritis, keratitis, and many episodes of eyelid swelling.

NicoleB
04-02-2011, 06:10 AM
nothing was EVER biopsied. i should have had my bloody scabby septum biopsied when it was active, but nobody thought if it until it went away on its own. my first symptoms were a stinging itchy feeling inthe corner of my eye that seemed like i was allergic. sometimes the eye area would swell a bit, and if i rubbed it, the whole thing would break out into an allergic-like pinkeye. so i stopped wearing all face creams and tried to avoid allergic triggers. nothing helped, even antihistamines. one day my eye was bloodshot so i went to an eye doctor who gave me steroid drops. he called it mild episcleritis, and asked if i had an underlying AI disease. i said "i think so! Since then my eyes have remained mosty normal. if i feel that stingy itchy feeling returning in the corner, i would take one little drop of eye steroid and i'd be good for weeks.

elephant
05-03-2011, 09:53 AM
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
05-03-2011, 12:20 PM
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
05-03-2011, 09:38 PM
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
05-03-2011, 11:55 PM
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.... :biggrin1:

maria garcia
05-04-2011, 01:33 AM
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
05-04-2011, 01:41 AM
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
05-04-2011, 01:45 AM
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
05-04-2011, 01:58 AM
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.