Flares

[Chadwyck]

Does anybody know why a person would get flares while in remission? At my last doctor's visit, they gave me a tonne of questions to determine if what I was going through were in fact flares or that's just how my body behaves. She told me that some flares are so bad that a patient has to be hospitalized for it. Well, thank God it wasn't like that for me. But even up until last night, I had the crusting in the nose which hasn't happened since last summer and the nosebleed along with it. Also, the harsh coughs are back since last week. Wegener's can be really hard to understand when it comes to the symptoms. I feel bad for asymptomactic Wegener's people because you can't really complain about what's not bothering you...while it's damaging you.

[Lightwarrior]

Chadwyck,
I am an ICU nurse and one of the hardest things to wrap my head around (still is) is that there are no cause and effects with Wegeners, I educate ICU nurses and I teach them to always anticipate what is coming next. You can't do that with Wegeners. This is a sneaky disease that has no rhyme or reason. In the beginning I worked out elaborate charts to track my symptoms and try to predict the next move. Other than being a nice historical information gathering instrument it had little predictive value. Jack advised me early on that I couldn't quantify or predict. Two years later and I still have no clue. I think for the very first time I may be in remission, although it takes 10mg of methotraxate, 5 mg of prednisone and 800/160 Bactrim to keep me there. I still can't walk more than 15 feet without becoming short of breath but when I use my scooter I feel good. I still tire easily, riding my scooter all over the unit all day makes me tired (go figure) but this is the best I have felt. I am aware that this afternoon or in the morning things could change on a dime but have decided to enjoy it while it lasts. I know this wasn't the answer you hoped for and I hope it is not the answer for you.

[Chadwyck]

Thank you Lightwarrior. Surpisingly you do what I do... have some other way to get around. I bought an e-bike specifically because of the joint pains. LOL Hey, it did the job because my ankles couldn't take the pressure from every foot step. It's just nice to hear from someone else with Wegener's whether you have the answers or not, it's still appreciated. At least I don't have to explain to people on this forum what Wegener's is. Everywhere I go, people ask what I have and when I tell them....all of a sudden I feel like a university professor giving a lecture. HAHAHAHA But at least you understand what I talk about and I never have to explain what I mean when I say flares, or where in my body it's affecting. I hope you are doing well!

[Lightwarrior]

Your welcome Chadwyck, it is nice not to have to have lengthy explanations. My personal favorite is, if I would just walk more, maybe I wouldn't need my scooter. I don't even bother telling them that if I walk more, I won't be able to breathe and I won't need anything. The more activity I have, the worse I feel.

[Chadwyck]

hahaha it looks like my e-bike and your scooter are our saviors. The fact that you are an ICU nurse, I feel even better! You totally understand what I say. Initally my family doctor couldn't figure out the problem and tried to convince me that everything that's happening to me was all in my head. I beleived him! I went to work the next day with that in my mind but my body kept telling me I can't do this, I can't do that. I ended up going home sick 3 days in a row. This is when I came to the conclusion... my body isn't making up stories! My body is not capable of telling lies... something is really wrong but the family doctor just doesn't know what the answer is/was at the time.

[Dryhill]

My favourite is you look so much better now you must be over the illness.

[Al]

Chadwyck,
I am an ICU nurse and one of the hardest things to wrap my head around (still is) is that there are no cause and effects with Wegeners, I educate ICU nurses and I teach them to always anticipate what is coming next. You can't do that with Wegeners. This is a sneaky disease that has no rhyme or reason.

Just an elaboration here: There are always "causes" and "effects"--it's just that with a disease of this complexity, any reductionist attempt to nail them down is, I think, doomed to failure. Still, there are a few specific things concerning relapses that seem to be true (not that we can do much about them!). Given the fact that our bodies produce ANCA, which are now believed to be directly pathogenic (destructive), the trick is to keep either their numbers down or their destructiveness down. No one knows for sure how to accomplish the latter, though some new ideas are being researched even now. The former is where immunosupressive drugs come in. One key way instigator of antibody proliferation is what is called the cytokine storm--cytokines being the chemical messengers of the immune system. During infection, massive numbersof cytokines, both pro-infammatory and anti-inflammatory, are generated and work their ways to the supposed battlefield. Unfortunately, in the ensuing fight, there can be a lot of collateral damage. This is the relapse. So, it would seem necessary to avoid any infection, or anything else that stirs up the immune system. Not so easy! Indeed--here comes the double edged sword--it is those very drugs we take that make infections more difficult to avoid. I think that in the future, immunosupression will be viewed as barbaric, but for now, it's the best we can do. Both rhyme and reason are, perhaps, in the distant future....

Al

[Al]

hahaha it looks like my e-bike and your scooter are our saviors. The fact that you are an ICU nurse, I feel even better! You totally understand what I say. Initally my family doctor couldn't figure out the problem and tried to convince me that everything that's happening to me was all in my head. I beleived him! I went to work the next day with that in my mind but my body kept telling me I can't do this, I can't do that. I ended up going home sick 3 days in a row. This is when I came to the conclusion... my body isn't making up stories! My body is not capable of telling lies... something is really wrong but the family doctor just doesn't know what the answer is/was at the time.

This made me laugh. Fact is, your doctor may "know" more than you, but perhaps not much. In any case, at the end of office hours, he or she gets to go home, have a cocktail, and watch TV sort of thing (a very few might read a journal article or two). But you have to live with your body 24/7.

Al

[Chadwyck]

Well put Al! What surprises people the most is the fact that I loved the weight gain and most people fear it. My biggest problem was weight loss for no apparent reason! I would spend $250-$300 on groceries and I live by myself. I would gain 3-5 pounds a week and 7-12 days later I would lose 15 pounds. So out of all the annoying side effects of taking prednisone, I have to say, now that I'm completely off of it....hahhaha, I MISS MY FAT! I used to shop in boys sections of department stores because men's clothes wouldn't fit my tiny frame. HAHAHHAA

[Al]

I like your attitude, Chadwyck. I'm one of the small percentage that lost weight on prednisone, the the results were just as expensive: I had to replace my wardrobe. It was too embarrassing to have my pants drop unpredictably.

Al