Your first flare?

[Christina32]

How did it happen, how long after diagnosis, at what point in medication..... I'm curious about people's first flare and thereafter. I'm coming up to a year since I was really ill and diagnosed. It's been a very bumpy road but overall things are good. My pred taper is going well and with any luck I'll get off of it soon. Of course I'm concerned the disease will come back and take me for another ride but am still optimistic 'we're' done! I'm interested in how each persons first flare came about or how many people haven't had one. Anyone in drug free remission? I want to hear the great and the not so great. I'm on low dose pred and azathioprine. I had rituximab infusions in april/may and currently standing by for another one - if needed. Thanks!!

[me2]

typing with one hand today.

this will be short. bad news- my first flare started 14 years ago. i'm only now maybe coming out of it. im still on lots of meds.
Good news- i went twenty years in drug free remission prior to that
the story is very different for everyone and completely unpredictable I'm sorry to say.
but twenty years is a pretty good run -14 years is an unusually bad stretch i think

[annekat]

My first and so far only flare, a moderate one, happened maybe 1.5 years after dx, over a period of time. After maybe 8 months on CTX (yeah, too long), I was tapered off that and started on MTX at the same time. Then I was just on MTX for I guess about 6 months before the flare may have started, and was tapering pred from 20mg. to 10mg. I think the flare started in the late fall of 2012, after I'd had a cold. I just kept coughing and coughing, which I do anyway, so it was hard to tell what was what. I had a few joint pains in my hands, which I use for pottery making, which could have been from overwork. I was overly tired and just didn't feel quite right and told the doc so, but he thought I was OK and didn't order a blood draw right then. Then a month or so later I started feeling a lot worse and was having rashes, fatigue, moderate fevers, and night sweats. This convinced the doc to get a blood draw, and the results showed a significant increase in inflammation, that I was having a flare. It was nowhere near the level of inflammation I had had at dx, but still up there. My MTX dose was only 10mg, quite low from what I've read on here. He raised it to 15mg., where it still is, and raised my pred back up to 20mg. The med adjustments knocked out the flare in short order. I'm now down to 7mg. pred, and feeling a little weird just lately. So will keep an eye on things and get another blood draw if it continues. My inflammation level is still not quite as low as it should be, but pretty close. So anyway, I feel my flare had a specific cause, that I was undermedicated, and it took awhile to develop. I might add that I was going through a stressful time, and it was winter. I just don't feel I do as well in winter.

This may be in sharp contrast to those who have been stable for months and whose flares seem to come out of nowhere, for no particular reason. What a goofball disease.

[annekat]

typing with one hand today.

this will be short. bad news- my first flare started 14 years ago. i'm only now maybe coming out of it. im still on lots of meds.
Good news- i went twenty years in drug free remission prior to that
the story is very different for everyone and completely unpredictable I'm sorry to say.
but twenty years is a pretty good run -14 years is an unusually bad stretch i think

We were typing at the same time or I would have commented. 20 year remission followed by 14 year flare is certainly noteworthy and, I guess, very unusual. I certainly hope you ARE coming out of it. Again, what a goofball disease.

I wish I could have kept my flare story as brief as you kept yours, even if I didn't have hand surgery today. I hope that was a success, they found out what they wanted to know, and that the recovery will be fast.

[pberggren1]

Wow Kirk, I had no idea you have been in a flare for 14 years I can't imagine having disease activity going on that long unchecked.

[Alysia]

typing with one hand today.

what happend to your hand ?
was it a flare all thess years or smoldering ?
my wg is smoldering for years, so it is sometimes difficult to diffrentiate a flare from it, although a flare is more acute....

[mishb]

5 years down the track and I haven't hit remission so I guess no flare.
I am at a comfortable, dull pain and stuffed nose level - therefore if I was to have a flare I presume the pain and nose would be worse.

[me2]

hey, i'm up at 2;42 AM because my thumb is throbbing. so , what do i do ? i check in with my friends who understand this side of life better than most. ihave never typed with one hand before. amazing how quick im adapting. my hand is going to be ok , thanks for asking anne and alysia
it is not related to wg problems (probobly)
i had weird spot under the nail that my doc wanted to remove and biopsy.
i am lucky that ihave a fingernail doc i trust trmendously that it needed to be done.
he did not have to surgically follow 'the thing' up into myfinger so that is a good sign already. he wasn't sure if he wold until removing the nail
i now see why under the fingernails was such a popular area to torture people- it bloody hurts . ha

hey phil buddy, yeah, it really has been that bad that long. i don't talk about it too much. when my hand gets better i will tell more of the story.
part of the reason i have not talked about it is to not discourage new people here. my case is not usual , as already described, in both goog and bad ways.
i want people to be encouraged because this is closer to reality than my very crappy 14 year stretch

i promise i'll tell the story more later. that in itself shoes i have at least some signficant reson to think the narrative is changing.

right now, i'm gonna dig ou the pain pills ha
thanks guys

[mishb]

Kirk, it's just over 10pm here in Oz, so you can stay on here for a few more hours before we have to go to bed.

I'm sorry about the hand and I'm sorry you have had WG for so long.......you are one tough cookie

To tell your story would not be discouraging others on here.
Everyone needs to know that things can be worse - or even that things will be better.

I hope the pain pills work for your thumb
I send you some gentle hugs

[me2]

thanks mishb- you are always very kind and giving
double dose of pain meds , lets see what these babies can do- ha
this pain, as bad as it is, is much more bearable than wg because i know it will get better in a couple of days
damn wg we never know- pardon my french
thanks for the free minutes on the mishb oz pain hot line