Flares

[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?

[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?

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