Avg time between flares -- ??

[KathyB]

As I'm at 5 months since diagnosis and a little over a month from my next Rtx infusion series, can anyone share the average time they've had between flares? My health issues so far have come from meds and being immune compromised. With my latest unresolved issue (gall bladder?) and now sore throat and thick head, I'm wondering what's next and when ... (anyone have a crystal ball?!)

[Al]

Crystal balls are pretty tricky, Kathy. Even when accurate, you never know how to interpret them. I don't know that there is any "average time between flares", or at least any that wold make sense. There does, however, seem to be a general idea of how long an RTX series is good for: 6-12 months. Also, for a few people, relapses seem to be seasonal. This may be due (in those cases) to the fact that bronchial infections are more likely in the winter. (For some sufferers, myself included, there is a positive correlation between a bronchial infection and a flare.)

This isn't a crystal ball--sorry--but humans aren't really built to foretell the future anyway....

Al

[Psyborg]

Kathy,

As Al said, I don't think there is an average time. Some folks get into remission and stay there for very long periods. I'm sure that there are probably some who never flare, as we probably would never hear from those folks :).

For me my single flare was tied to a surgery I had, so I'm pretty sure that for me avoiding non-critical surgery will be important going forward. Though I don't believe I ever really hit medicated remission until after that flare when i had RTX.

My 2 cents :)

[KathyB]

As always, thanks for your thoughtful comments and observations! I went to infectious disease doc today to follow up with new pneumonia meds as well as the stomach pain problem. No answers -- the tests I've had don't confirm anything. I'm being referred to a gastroenterolgist. All weekend I've had a sore throat, drainage, sore ears. They tested me for strep and did blood work but don't suspect a positive result. My rheumy wants me to start seeing an ENT to address my ear popping/pressure. He says my ear drums on the outside appear normal except for their dark color indicating some type of fluid involvement behind them he can't see or diagnosis. Does this make sense?

KB

[drz]

As I'm at 5 months since diagnosis and a little over a month from my next Rtx infusion series, can anyone share the average time they've had between flares? My health issues so far have come from meds and being immune compromised. With my latest unresolved issue (gall bladder?) and now sore throat and thick head, I'm wondering what's next and when ... (anyone have a crystal ball?!)

Have you been told you are in remission yet? During my first several months my Wegs roller coaster ride went up and down as symptoms waxed and waned. Only after the doctors considered me in a drug induced remission did I have what they considered a flare a couple months later but I was still on pretty heavy dose of meds to control the Weg dog. In the first few months of treatment they just viewed increased symptoms as not having yet achieved adequate control. My second flare one was about four months later after they said I back in drug induced remission and that was about ten months ago and I am still considered as being in a drug induced remission and I am hoping this will last a long time. My understanding is that most people have at least one flare sometime but many people are fortunate enough to not do so. The only statistic that really matters to most of us is our own history. After all most people are lucky enough to never have any GPA symptoms so we are in a definite minority.

[drz]

As always, thanks for your thoughtful comments and observations! I went to infectious disease doc today to follow up with new pneumonia meds as well as the stomach pain problem. No answers -- the tests I've had don't confirm anything. I'm being referred to a gastroenterolgist. All weekend I've had a sore throat, drainage, sore ears. They tested me for strep and did blood work but don't suspect a positive result. My rheumy wants me to start seeing an ENT to address my ear popping/pressure. He says my ear drums on the outside appear normal except for their dark color indicating some type of fluid involvement behind them he can't see or diagnosis. Does this make sense?

KB

Fluid behind ear drums is often result of blocked Eustachian tubes. It can also happen from ear infections. I have had both problems since my GPA diagnosis. Both can be quite painful and a good ENT can usually sort out what is causing the fluid buildup. If they feel like they might rupture it might pay to have fluid drained. Some people have had tubes put into ear drums to avoid fluid build up.

[Sangye]

Kathy, I suggest you avoid trying to extrapolate much about flare times from other people. It's all over the map and there is no way to predict when a flare will happen. In the beginning it's a natural impulse to try to nail something down, but it just doesn't work with Wegs. Take it a day at a time.

[Al]

Kathy, as I just noted to Maria and Nancy, the Wegs dog is not one for reading the medical textbooks, so statistics and such don't mean much, even when they sort of exist. You can sort of get an idea how others have deal with their suffering, but that means essentially zero when trying to sort out what all this might mean for you. Sorry, but that is just how the tail of the Wegs dog wags!

Al

[KathyB]

I seem to want answers to a strange, complicated disease when definitive answers aren't always available. Frustrating! It also doesn't help that my level of understanding is woefully lacking! I've not been told I'm in remission, just keep having issues requiring follow up. I'm so tired (lack of sleep, feeling punky, and want my old life back). I haven't had a good cry in a while either! All of what you share is my food for thought and I'll be cautious not to place each of your experiences in mine. Your maturity in all matters WG is very helpful and I sincerely thank you.

KB

[Psyborg]

I seem to want answers to a strange, complicated disease when definitive answers aren't always available. Frustrating! It also doesn't help that my level of understanding is woefully lacking! I've not been told I'm in remission, just keep having issues requiring follow up. I'm so tired (lack of sleep, feeling punky, and want my old life back). I haven't had a good cry in a while either! All of what you share is my food for thought and I'll be cautious not to place each of your experiences in mine. Your maturity in all matters WG is very helpful and I sincerely thank you.

KB

Don't feel bad Kathy, I've been in the same boat on and off all along. Being an IT guy I like to think of the world in pretty concrete terms, I have a difficult time dealing with things that can't be nailed down. I bring up IT as I was told by my Doctor that IT folks and engineers have the toughest time with this aspect of the disease. Oddly that made me feel a bit better knowing I wasn't the only person frustrated by the whole mystery aspect of the disease.

[delorisdoe]

For me, it seems that as soon as i "forget about the wegeners I flare". So, for example, I flare aroundt the same time I stop checking my klenex etc for blood, or when I decided I no longer seem to have body pains.