possible wegs...not being treated at the moment :(

[NicoleB]

Hi, I’ve been battling symptoms for 8 months now. Started as eye inflammation (mostly irritated pinkeye and progressed to episcleritis once). Also, sinus problems that lasted for months, nose pain, a bloody eroded wound on my septum that would constantly bleed and crust, lung pain and shortness of breath, and roaming body pains. Sounds to me like all the classic symptoms.
However, they come and go. The eyes bother me now and then, the nose ulcer suddenly went away (after 4 months of being “open”), the sinus problems have mostly disappeared, the lung issues are still there, tho they only bother me once or twice a month (flares lasting 1-7 days), I have occasional ear stuffiness that comes and goes, and tiny red dots on my skin (not many, and the rheumy didn’t seem all that concerned).
All my tests have been normal. The doctors were worried at first, especially at the nose ulcer. But ALL blood tests, ANCA, SED rate, CRP, etc, are normal. Once those results came back, my doctor sort of dismissed me, saying “we’ll watch and wait”. I got frustrated because I was SURE I had wegs, so I went to an actual wegs doctor. He was concerned about my nose and eyes, but he didn’t think I was sick enough to have true wegs, though he felt something autoimmune was going on. Blood tests were repeated, as well as and a lung xray which were all normal. At this point, the doctors wont 100% rule out mild localized wegs, but they just don’t think I’m sick enough to have it, nor do they think I have anything serious because my blood is so good. I’m at a loss now. True, some of my problems have gotten better or cleared up, but they may very well return because I’m on a flare basis. If I’ve already seen one of the best wegs doc in my area (vasculitis center in Boston), and he thinks I’m ok, then now what do I do? No doctor wants to put me thru the harshness of steroids and immune drugs without knowing what I have, and not to mention, all my symptoms are mild and not threatening.
Can you really have wegs so mild that you can just let it go and watch it? my kidneys appear to be fine. I just don’t like the idea of letting it fester long term. And I’d love to be treated now while its mild so I can avoid the bad drugs like cytoxan. Thanks.

[Luce]

Sorry to hear of your suffering and your doctors choosing not to try any treatment. I'm surprised they haven't at least given you a short course of steroids to see if there is any improvement in your symptoms, if things got better it would be an indication of inflammation in your body which would be a ood starting point. Your symptoms certainly sound like WG or another similar auto-immune vasculitis illness.

[katarzena]

No, you can not just wait for the simptoms to come and go just because they last for a short time. In the begining pain comes and goes, I had joint pain once and never again for a half a year. Then every month, after that every week and it still didn't bother me until one day I couldn't get out of the bed.
It just get worse and worse if not treated. The earlier treatment started - the more succssesful it will be!

[NicoleB]

well i did re-email the weg doctor and explained that my ears have been bothering me. its tough because his office is far away and its getting in the way of work to keep going to these appointments.

i DID get a short week dose of prednisone for my "sinus infection" (yeah right), and i'm not sure if they helped because my symptoms are so up and down.

[jola57]

Hi NicoleB, sorry to hear about your troublesome symptoms. I think that you answered your own question. Because your symptoms seem to come and go and resolve themselves it would be hard to treat them with a short course of prednisone. they tried that and the results were inconclusive as to wheter it resoved itself or because of the steroids. Since all your tests are negative it might mean that the disease has not progressed to a stage where it plays havoc with your immune system completely. Give a big cheer for your body which is strong enough to keep wegs at bay. I hope that your docs will monitor your blood work regularily for weg.

[NicoleB]

thanks. all i can really do is watch closely. i told my rheumy that i would feel more comfortable if i return every couple months and keep up on blood tests in case anything changes, and he agreed to do so.

[elephant]

Hi Nicole, I would keep a daily dairy on your symtoms and make sure you can see the Wegeners specialist again. What is your Wegeners specialist name? I think you have it....and it will come back in full blown where your sinus stuff won't go away and ears stay stuffy and possibly deaf, kidney damage, lung damage. Not everyone has postive lab results.
Stay strong and be very persistant. You sound like you are a go getter!

[NicoleB]

i first talked to Dr. Merkel thru email, but he was on a trip when i came into the office, so i saw Dr. Paul Monach, who specializes in WG, among other things. its very hard to push yourself on a doctor when you have such perfect blood. strangly enough, months ago, i tested mildly positive for ANA, but when the test was repeated weeks later, it was no longer there. either way, they all say "the wegs patients always look much worse than you" even when they saw my bloody nose patch, they were like "its such a small spot. wegs typically involves more of the nose than that." basically, the rest of my nose looked healthy. of course, they still think the nose is something autoimmune, even if its not wegs. but like i said, the nose is spontaneously better right now. i dont like the idea of getting a chest CT scan because i'm only 27 and have had 4 CT scans in my life (though, non aimed at the lungs yet). i've honestly seen around 7 doctors so far. its getting frusterating.

[Jack]

Your case sounds very much like my own, but I can well understand your doctors reluctance to treat you without a good diagnosis. The long term effects of treatment can be nearly as bad as the disease!
In order to diagnose Wegener's, the docs use the BVAS test which adds up a score based upon multiple test results and observations. It sounds like you don't have enough symptoms to give a good result at the moment, so they will hang back and jump in quick if something seems to be developing. In my own case, the huge sinus problems I had been suffering from (along with a lot of other symptoms) faded for almost a year before coming back with a vengence. I then nearly died due to renal failure before Wegener's was diagnosed.
If you do currently have Wegener's, then consider yourself in a sort of drug free state of remission. Be prepared for a flare and act quickly should things start to go wrong!

By the way, I used to have the tiny red dots too - just the odd one here and there. One of the students did some biopsies of mine, but I'm not sure what he found.

[JanW]

NicoleB: just so that you know, my rheumy has had a patient with WG for more than 10 years that he has never treated with so much as an aspiriin. It's rare, but it can happen. So far hers has never progressed beyond nosebleeds (which were bad enough to send her to the hospital, which is where the diagnosis was made when a biopsy was taken). I on the other hand have not had a positive biopsy, but have had positive bloodwork, and am not particularly sick at the moment. I have pretty serious subglottic stenosis and have had it at least since 2005, but wasn't diagnosed until January of this year, and my overall health during that time didn't decline (it was foot pain that led to get bloods taken and led to my diagnosis; I also developed a saddle nose, which my ENT calls the stigmata of wegs because it's an obvious physical manifestation that occurs in almost no other instance except cocaine abuse).

With Merkel's folks you're in good hands; watching him on webcasts from the Vasculitis Foundation's last patient conference they seem like conservative yet very thorough clinicians and researchers.