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 :sad: 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 :hug1::hug2:

[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

[mishb]

Anything to help out a fellow weggie :biggrin1:

I'm glad the thumb issue is not WG related - I guess having it for so long (the WG not the thumb), you would be able to tell the difference.
But, as you say, we never know with the stupid disease.

[Alysia]

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

Hi Kirk,
I am sorry for your pain :crying: maybe an ice can help ?
please share with us your story. maybe we can learn from it some lessons to treat ourselves better.
for example, my story is being almost 4 years without proper treatment. now I know to warn others.
and even if we will not learn something from your story, at least you will not have to be with alone. we can hold you in it.
I hope the pain killers are already working.

[windchime]

Hi Kirk, Hope the pain pills worked. Hand surgery can be rough but do try the ice and keep it elevated on a pillow. That will help with the throbbing. It helped me when I had hand surgery. I agree with everyone else please share your story.

Back on topic. I didn't have any symptoms when my wegs was diagnosed. They found the lung nodules during a routine chest X Ray and since I was basically symptom free and it was a hundred years ago they chose not to do treatment. That was in 1972. I didn't start having real problems until the early 2000's. Then I basically smoldered until 2013 when I finally got some decent treatment. So I don't know how to classify that mess. :unsure: It is what it is and I've learned to live with it as has everyone else on here. I've just learned in the past 4 months to take better charge of my health care when it comes to the wegs. Being proactive is soooo important.

[pwc51]

My first flare was about 9 months after completing my Cyclophosphamide infusions. Rheumy thought I was in remission so was reducing the prednisolone. At 9 months the bloods had gone sour, the roaming pain was back and rashes on my lower legs. Five months of Cyclophosphamide infusion followed which did not touch it so switched to RTX which worked a dream. Second flare was 2 years from completing the RTX.

[gilders]

It's been many years since my first flare so exact time spans I can not remember but I'll tell you what I do remember.
I believe I had been on Aza/pred combination for approx 2 years after first being diagnosed when I eventually tapered off both drugs. It was only about 2 weeks after stopping aza and pred when I began to feel I was relapsing/flaring. ANCA results were negative, but my Dr trusted my self assessment and I began treatment again. 2 weeks later all the blood tests (ANCA, inflammation) came back positive. I was obviously very in tune with my body.

Fortunately everytime I've relapsed there has been a longer period between coming off the medication before I flare up again. In fact this latest flare that I'm currently getting treatment for has left my kidneys alone for the first time, so perhaps overtime the relapses are becoming less aggressive??. Having said that, this relapse has taken a long time to respond to treatment. I'm hoping this trend continues so eventually I can go many years without treatment.

Both my and my Dr's aim is to always eventually come off medication and only restart it when I flare. This may not be the route other people and drs choose. Some prefer to be on a low dose for life in the hope that it will be less likely to relapse/flare. I really don't cope well on treatment so my choice is always to be drug free whenever possible.

[Christina32]

Interesting! Without being a hypochondriac I try to be well aware of my body and symptoms. Tricky for me as I haven't had a flare - only my initial brutal battle. I feel a little more nervous as I near an end to my prednisone journey. Not sure how long I'm to stay on azathioprine after. I've had one cold without any problems, and hopefully I'm not picking up strep throat from my son this week to make a second. Tomorrow will be one year from my initial diagnosis. The day that saved my life...

[renidrag]

I am in drug free remission and have been since 2010. I still have the dregs this disease left behind. Just this past week the fatigue has doubled its fun in my body, I am keeping a close eye on it. Don't know what to expect in a flare. I like the last line "the day that saved my life" my wife and I thought I was "five days from dead." Scary times. Good luck.
Dale

[MikeG-2012]

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!!

My first flare began 18 months after first diagnosis. First time around was in April 2012 and treatment consisted of Cytoxin and pred. Then moved on to Mychophenolate after. 6 months. Sinuses started flaring in July of 2013, and it took until November to convince my rheumy that it was a flare up. My ANCA kept coming back negative all along. Now, we know that ANCA alone is not a definitive indicator of a flare. In November 2013, I had four Rituxan infusions. Started on pred again at 80 mg, and I am now down to 15. Sinuses haven't looked better in two years according to my ENT. I'll say this; my first flare up sucked. The migraine headaches associated with my flare up were consistently 7-8 of 10 on the pain scale, and occasionally reached 9/10. For me, I think my trigger is going to be sinus related, not my ANCA, not kidneys, not swollen joints.

[Christina32]

Drug free remission sounds good Dale - it's what I'm hoping for. What treatment did you have, azathioprine? I'm wondering what the protocol length is. Sounds like your diagnosis day was similar to mine!
Hope I didn't jinx myself asking about flares as a week ago my heel felt like someone hit it with a hammer, couldn't walk for 2/3 days, it got better then today hard to walk again. Fatigue is there but nothing new and my crp was recently 20. ( <5) Could that number reflect a cold infection? I never had severe joint pain with diagnosis, mostly ears, mouth, nose, lungs.... So I'd think possibly like you MikeG my triggers would be similar. As much as you never want to flare you kinda want to get a feel for what to expect. After having a cold I feel more brave to conquer more or at least not be scared when someone's sniffling!

[RudiK]

Here is the result of my first try at drug free remission. My docs tried drug free remission in December 2013 after being in remission for 2 years. I started with dropping the preds (was on only 1mg) at then end of Dec 2013, with plans to drop the immuran at the end of January 2014. I didn't even make through January. The blood test on Jan 23 revealed that I had relapsed. So I went back to 5mg preds and stayed on 50mg immuran. It took until last week to find out that this time the WG hit my lungs. So now I'm back to 40mg of preds and replacing the immuran with 2 g (yes grams) of cellcepts. The plans are to take 40mg preds for 10 days, then 30mg for 10 days, then 20mg for 10 days and then to 10 mg until future review. The cellcepts is planned for 4 weeks on 2g, then down to 1g, then down to 500mg and then review it. This will be my first try with cellcepts. I was also told that I would be back on Cytoxan if the cellcepts didn't work within 3 months, so I hope the cellcept will work, I don't want to go back on cytoxan.

[Christina32]

Hey RudiK, what was it on your blood tests that indicated a flare? I'm fortunate to usually get my results same day. Also I'm not sure about length of time on imuran once I've dropped pred. Sorry you had to get bumped back up and I really hope the cellcept works for you and you don't have to go back to cyclophosphamide.

[RudiK]

Hey RudiK, what was it on your blood tests that indicated a flare? I'm fortunate to usually get my results same day. Also I'm not sure about length of time on imuran once I've dropped pred. Sorry you had to get bumped back up and I really hope the cellcept works for you and you don't have to go back to cyclophosphamide.
Hello Christina, the blood sedimentation rate jumped from 5 to 43, c-anca jumped from less than 1:20 to 1:160, and the serine protease jumped from less than 20 to 96.

[renidrag]

Sorry to hear RudiK. So well for a long time too. Hope you have a short flare and definitely hope Cyclo is not involved in treatment.

CHristina: I was diagnosed (finally) in August 09 presented in lungs only and I was treated with Cyclo, Prednisone and Bactrim along with Calcium and D vitamin and Amoprezole. Was off Pred in Feb of 10. Off Cyclo on June 30, 2010. Still in remission. Do take meds for blood thinning and COPD and Cholesterol. Fatigue and Neuropathy have followed me from the beginning and remain. Be careful of your heels, it could be a predessor of neuropathy. I ended up having cortisone shots in my heels and what a difference. Been about a year now. I could not take Imuran and was on no maintenance drugs. Hoping for the best.

Just adding here, yesterday I was going over some of my test results from last year. 2/13 sed rate 39………5/13 sed rate 62……CRP 27.2. Now do I have anything to worry about? Go back on April 18. Doc said inflammation was hovering.
Dale