Overcoming a flare?

[norcalian]

My new rheumy told me in my last appointment that they try for drug-free remission once and then if I flare as a result of being without drugs I will be placed on maintenance drugs (most likely AZA at some level) for the rest of my life (or until some other treatment procedure comes around). I'm still new at all this, so I haven't flared yet. I haven't been told that I am officially in remission...but I am. My blood work is all pretty normal and I feel pretty good (except for the occasional day where I feel run-down and stay home from work, like today). My original rheumy told me that he expected that with my case that I would flare every year and a half to two years. He said each flare would be treated pretty much the same - with a two-shot of RTX and a temporary bump in pred and AZA. I had full-blown WG - I don't think there's any expectation that I will be able to get through a flare without treatment. But I can live with the treatment plan my original rheumy outlined.

[Al]

My new rheumy told me in my last appointment that they try for drug-free remission once and then if I flare as a result of being without drugs I will be placed on maintenance drugs (most likely AZA at some level) for the rest of my life (or until some other treatment procedure comes around). I'm still new at all this, so I haven't flared yet. I haven't been told that I am officially in remission...but I am. My blood work is all pretty normal and I feel pretty good (except for the occasional day where I feel run-down and stay home from work, like today). My original rheumy told me that he expected that with my case that I would flare every year and a half to two years. He said each flare would be treated pretty much the same - with a two-shot of RTX and a temporary bump in pred and AZA. I had full-blown WG - I don't think there's any expectation that I will be able to get through a flare without treatment. But I can live with the treatment plan my original rheumy outlined.

As I have noted before, "remission" is a strange term. We strive for it, of course, but what does it really mean? You are in remission, sort of, so long as the disease is not active (though it can be smoldering and you might not know it). Then you get a flare and suddenly you have relapsed. How long between flares? No one knows.....

Al

[norcalian]

I think the general consensus is that when you're labs look good and you feel good that you are probably in remission...if not just for the sake of how to move forward with treatment goals. (interestingly, my new rheumy says that she pays more attention to how I feel than she does to slight changes in my labs to decide when I'm having a "flare"). But I agree with what everyone is saying here...there is not set rule as to how long people have between flares. As we all know...the only thing that seems to tie us together in this disease is the diagnosis (the presence of granulomas, ANCA - usually, being a subset of vasculitis, etc) and not even that all the time. But definitely the experience is different and specific to the individual. I've seen people on this site talk about riding their bike for 20 miles just a couple of months after getting out of the hospital. That definitely was NOT my experience...and I am relatively young and was in pretty good shape before getting sick. I got PCP, most people don't. It's really tough to nail anything down in terms of this disease. The hope is a long, drug-free remission...although I'm being told by my rheumy that long-term drug-free remission is pretty rare...so I guess that there is that statistic out there...the statistic of "rare".

[delorisdoe]

That's great to hear, thanks for posting!

I am going to send you a pm.