Flare-ups?

[Daggar]

I've got one of those confusing questions that seems to give doctors that glazed over look....

How long of a period does it take before a WG patient realizes that they are having an actual "flare-up"? Is it hours, days, weeks...? Are there signs in the lab results that give you a warning?

and...

How long does it take for the WG activity to further damage organs that have already been compromised?

Although Holly's doctors have been "incredible" they seem to shy away from talking about the details of a flare-up other than watch for any symptoms that she had before treatment and anything "new or unusual". I know that they are extremely worried about her having one -- thus the high dose methylpred each month until June -- but haven't said how long a flare-up takes to do more damage to her kidneys.

[drz]

I've got one of those confusing questions that seems to give doctors that glazed over look....

How long of a period does it take before a WG patient realizes that they are having an actual "flare-up"? Is it hours, days, weeks...? Are there signs in the lab results that give you a warning?

and...

How long does it take for the WG activity to further damage organs that have already been compromised?

Although Holly's doctors have been "incredible" they seem to shy away from talking about the details of a flare-up other than watch for any symptoms that she had before treatment and anything "new or unusual". I know that they are extremely worried about her having one -- thus the high dose methylpred each month until June -- but haven't said how long a flare-up takes to do more damage to her kidneys.

I don't think you will find much consistency on this issue. It will vary from person to person and also for different times for same person. Best you can hope for is close monitoring of physical symptoms and frequent lab work and hope you catch any major changes quickly so they can be treated quickly. Once you have started any treatment regime flares tend to be caught quicker and be less serious than initial presentation when the diagnosis is uncertain or unknown. It sounds like her doctors have a handle on things and will react quickly if needed. They would love to be able to give you a stronger guarantee if they could, but Wegener's disease if often hard to predict. Best wishes for a smooth recovery.

[elephant]

I have what you would call mini flare ups..meaning my sinuses start to act up and won't go away despite this and that. A major flare up to me is increased tiredness, joint pain, short of breath and just of feeling not being well.
LIke Drz said it is different for everyone, but also many of us have the same warning signs that WG is at our door.

[LisaMarie]

i have to agree with them..everybody reacts different....i have tracheal stenosis , sinus involvement ,mandible growth loss of some hearingin my right ear...so i usually feel really fatigued and then my joints start hurting worse ...usually my jaw first then my sinus go crazy and it settles in my trach and lungs....i am a newbie with the WG diagnosis...so i am still learning...and the way i am wired...i want answers...and wiyh this disease sometime there are no answers.and you have to learn to accept that my idea of quality of life may have to change...hope Holly continues to do well..steroids can make us moody...so stock up on milk dud...theory i have is if i have the urge to speak incorrectly...i slowly chew a milk dud til my brain catches up with.my mouth...it works for me on this roller coaster ride

[Jack]

Sorry, but no easy answers from me either. I have had flares that I have detected myself from changes to symptoms and others that have only really shown up in my blood test results. Kidney failure is always worrying, but relatively easy to detect if the doctor is monitoring for problems. During a severe flare which would normally be evident from a big increase in other symptoms, kidney damage can occur quite quickly. A matter of a week or two. This is why it is important not to let things go unchecked for too long.

[Daggar]

I have been consistent in getting Holly in for lab work - no longer than 2 weeks between at this point. She doesn't mind the hospital visits and I'm of the mind that catching it early is likely to save her kidneys further damage.

The team of doctors seem to disagree on her progress... one group thinks she should be lowering her meds because all indications are she is in remission at the 3 month point. They've also told me that she only has to do labs when they have a clinic which is monthly. Her nephrologist disagrees so I've been cheating and taking her every two weeks.

Couple of more ?'s if I may.....

How soon, on average, do they start to lower your meds to a "maintenance" level?

How often do you normally do lab work during the initial stage after diagnosis vs. while in remission?

[Jack]

It very much depends upon the individual I'm afraid. There is just no predicting with Wegener's as to what will happen next.
In general, I think I would be expecting a move towards the less toxic maintenance type drugs within six months, but a return may be required if a flare occurs. This is not at all uncommon, but can sometimes be avoided by taking prompt action.
At the very beginning, I was attending twice per week and I don't think I got past 2 weeks until I was fairly stable. In remission I got up to three months, but never longer.

[Sangye]

I agree with the others-- it's highly variable between people and even within the same person. As far as lab frequency, if you're on ctx you need blood work every 2 weeks to make sure WBCs aren't dropping too low. With kidney involvement it sounds best to keep it at twice a month until she reaches a longer period of stability. I think if her neph says every 2 weeks s/he is giving good advice.

Other than that, monthly labs are usually sufficient. Even in the middle of severe flares Dr Seo has never ordered them more frequently than that. I don't have kidney involvement, though.