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

[Chadwyck]

Al, the best embarassment I've ever had was when I was at Toronto's Pearson International Airport! I was going to Jamaica. When I got to security the guy told me to take off my shoes and my belt. This was a couple years prior to getting sick of Wegener's, even though it was the cause of weight loss all along. Anyway, I asked him if I could just take of my shoes, and he said, "SIR, WOULD YOU PLEASE CO-OPERATE AND REMOVE YOUR BELT!" I said, "OK" I took my belt off and my pants dropped to the floor in front of everybody. So they all got a free show because I co-operated. HAHAHAHAHA

[Al]

Al, the best embarassment I've ever had was when I was at Toronto's Pearson International Airport! I was going to Jamaica. When I got to security the guy told me to take off my shoes and my belt. This was a couple years prior to getting sick of Wegener's, even though it was the cause of weight loss all along. Anyway, I asked him if I could just take of my shoes, and he said, "SIR, WOULD YOU PLEASE CO-OPERATE AND REMOVE YOUR BELT!" I said, "OK" I took my belt off and my pants dropped to the floor in front of everybody. So they all got a free show because I co-operated. HAHAHAHAHA

That distant thunder you just heard was me guffawing! Until I got new clothes, I lived in fear of just that moment. Interestingly, now that I'm on a lower dose of prednisone, I've gained some of the weight back. I hope I kept some of the old wardrobe....

Al

[Chris G]

Al - Seriously!? You LOSE weight on pred? What kinda crap is that? You're not gonna make friends that way! LOL

Chad - For me, mild nasal crusting is just a sign of slow simmering wg - nothing to worry about, but nose bleeds and the dry croupy cough are big red flags for me. If you're not seeing your doc soon, perhaps it's at least worth a phone call to them.

[Al]

Al - Seriously!? You LOSE weight on pred? What kinda crap is that? You're not gonna make friends that way!

I hope we can still be friends, Chris, but I swear I am not making this up! I lost about 8 kG in the hospital (possibly due to the delicious cuisine...?) and never gained it all back, despite the enormous appetite. I did pay for it in other ways, though. During the highest doses of prednisone, I always wanted to cook something, but I was afraid that, instead of the onions, I would slice off my hand instead for all the shaking. And I felt like my mind was racing ahead of itself, so everything felt of sync. This was complicated by turning from a life-long night owl to someone who was rarin' to go at 5:00. Fortunately, all this has abated with the tapered dosage, but I've gained back some of the weight I lost. But I still like to cook, so I guess my wife can't dump me yet!

Al

[Dryhill]

Al you have a wife AND you cook! What is the world coming to? I only learnt how to cook when mine left me, thank godness he also left the cook books. I have now come to realise that if God intended us to stay married why did He invent the microwave oven? :thumbup:

[Al]

Al you have a wife AND you cook! What is the world coming to? I only learnt how to cook when mine left me, thank godness he also left the cook books. I have now come to realise that if God intended us to stay married why did He invent the microwave oven? :thumbup:

Don't get me started about microwave techniques! But seriously, it sounds like you started cooking a little late. For me, it was, fortunately, one useful skill I could still practice those lousy months when I felt like a truly sick old man. Gotta hang on to those positives...

Al

[Chadwyck]

I don't believe this! I just had another episode of my nasal cavity clogging up cutting off my breathing and had to do nasal irrigation 10 minutes ago which of course led to another nose bleed. I hope this is just a trick my body's playing on me and not sneaking up a flare on me. I haven't had my hip surgery yet so my body can't afford any more abuse from Wegener's at this point.

[mishb]

Hi Chadwyck.

My nose also does this (only the right side). Everytime it clogs, cutting breathing, I do an irrigation.
My ENT has now told me to reduce the irrigation/wash as this is causing the bleeding. I have copied the reasons below from a website I visited.

"the nose that bleeds every day, every other day...... Typically, this bleeding comes from the anterior portion of the septum and stems from dilated blood vessels. The dilated vessels bleed, they then crust and every time the crust falls off, the vessel bleeds again, crusts, bleeds, crusts, bleeds, and on and on.
Aspirin, blood thinning agents and non steroidal anti-inflammatory agents such as AdvilR and MotrinR decrease your bodies ability to control bleeding."

My ENT said it is like a scab on a knee, if it gets knocked and falls off or you pick it off, then it continues to scab over and the process repeats and repeats, however if it gets left alone, the scab gets smaller and smaller and eventually will disappear on it's own.

I have reduced my wash (since last week) from three or four a day to one a day and sometimes not at all unless I absolutely can't stand it any longer. I must say that the size of the crusts has become smaller, but still bleeds when I do eventually do the wash or, unfortunately, when I sneeze.

I'm not advocating the idea of not doing an irregation, but I am going with my ENT's thought process and, so far, it is kind of working for me.

Good luck to you and I hope it comes good soon.

[Trudy]

Does anybody know why a person would get flares while in remission?

Just catching up on reading and was disappointed that more people did not comment on this. I think doctors differ vastly as to what is remission. I believe mine feels remission is not needing to take meds to perpetuate being well. Last appointment I asked so if I do all this i will eventually go into remission. He rather half smiled and said I wouldn't exactly say remission but you will be better. For my Lupus I have to stay on Plaquinil as everytime I try to get off I flare. So now I wonder what I will have to also stay on to keep the vasculitis from flaring. I have come to the conclusion that Remission is just a word and functioning somewhat normal is what counts. I know most of my 'Triggers" for Lupus, but would also like to know if more experienced Weggies know any definite triggers for WG.

What I am really curious about is - sometimes my Labs are fine and my breathing, joint pain, nose crusts etc. are all worse. Does anyone have this happen?

[mishb]

I have just been given the all clear from the Optometrist to be able to start on Plaquenil for my RA and possibly Lupus.

For me, I am fine with the term medically induced remission. If I have to take something for the rest of my life, then so be it.........as long as it works. Other illnesses (diabetes, epilipsy etc) are kept at bay by medication, so I figure, why not mine too.

My labs had a total turn about (last month) where the ANCA was negative but the ANA was positive, but the nose crusts and joint pains are worse than they were a couple of months before when ANCA was positive and ANA negative

[Al]

I know most of my 'Triggers" for Lupus, but would also like to know if more experienced Weggies know any definite triggers for WG....What I am really curious about is - sometimes my Labs are fine and my breathing, joint pain, nose crusts etc. are all worse. Does anyone have this happen?

Trudy--no one knows, definitively, the specific triggers for either the original onset or relapse. However, in general, relapses are highly correlated with serious infections, like bronchial viruses or bacterial infections. (Bacterial infections are also suspects for priming the immune system in the first place, though there could be other triggers as well.) As for your other question, the lab work does not tell everything, even if the tests are pretty comprehensive (and much of the time they are hardly complete). the overt physical evidence is much more important--particularly for the sufferer!

Al

[drz]

I think doctors generally agree that flares often seem set off by stress to the body. The stress may come from an infection, illness, serious life crisis, injury, or a medical procedure like an operation which is why they are very cautious about having any invasive surgery unless it is really necessary (medical emergency) or until you have had a longer period of remission and are on lower dosage of any maintenance drugs. But sometimes they seem to happen at random for reasons like the old Persian Proverb,-- because the sky is so high.

[Al]

I think doctors generally agree that flares often seem set off by stress to the body. The stress may come from an infection, illness, serious life crisis, injury, or a medical procedure like an operation which is why they are very cautious about having any invasive surgery unless it is really necessary (medical emergency) or until you have had a longer period of remission and are on lower dosage of any maintenance drugs. But sometimes they seem to happen at random for reasons like the old Persian Proverb,-- because the sky is so high.

This is true. Yet there are real reasons to suspect that some infections directly wound the immune system, in addition to the indirect route through added stress. Still, the proverb quoted here is apropos.

Al