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...that didn't get a flare up during treatment? Is that possible?
...that didn't get a flare up during treatment? Is that possible?
As I understand it, there is about a 50% chance of a flare occurring after successful treatment although many remain in remission for long periods. Most people on the site are those with ongoing problems caused by the disease so you tend to get a false impression.
I thought I saw someone on here who was in remission for 30 years. Like to know if he did anything that kept him in remission that long.
My doc's understanding is the same as Jack -- you are just as likely to never flare again once they get your initial flare under control as you are the flare again, even dozens of years later.
I flared while I was on Cellcept in June of 2008.
Yes, Katarzena. One of our members (Mike Caven) went straight into remission with his initial treatment, and was off all drugs for about 27 years. He felt great during that time. Last year he flared again, did the same treatment (ctx/pred I think) and within a few months was in remission again. I don't think we've heard from him since, so I assume in another 27 years we will.
Hey good for you Mike Caven....need to let us know how you stayed in remission!
That is great to hear. Wish there were more positive stories on forum though...
I think that there are lots of positive stories on this forum. For one thing, most of us have read that until the late 1970s the time from dx to death with WG was averaging 6 months. SIX MONTHS! Now there are many, many people who live with WG, work, raise families, GET PREGNANT after having WG and have children...essentially all of the normal things of life. That really wasn't possible before the combination of chemo and pred was shown to be effective in this disease. Those of us who live for 30 or 40 years after dx (and I am assuming that I will be one) will not suffer many of the effects of those who came before us because drugs are better understood. So, although many people get very sick with WG, the overall story is still a positive one.
Have to agree on that one with you Jan.
I believe that people that will get diagnosed in next decade or so will have a treatment even better the ours.
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