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Thread: Can you flare if your medication seemed to be working?

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    Default Can you flare if your medication seemed to be working?

    Hi everyone,

    Really wishing everybody well.

    I'm on methotrexate (injectable) and have been off prednisone for a while - I feel very lucky. My last flare up was last Fall. I was on prednisone after that but then weaned off it and switched to injectable methotrexate. At my last rheumatologist appointment, he said the medication seemed to be working and I was doing well. All was good.

    The past couple of weeks, I've been very stressed at work. I may have pushed myself too hard. Even my friends at work have noticed and encouraged me to take some time off to rest. My last flare gave me new symptoms of inflammation in my eyes (I had to wear sunglasses all the time, and it made me very sick and had headaches). Lately, my eyes have been bothering me again. I feel really unwell and my muscles hurt. My original symptoms was bad breathing from a granuloma in my airway, but my thoracic surgeon stretched my airway a couple of times and although my breathing is never 100%, I don't think it'll be a problem for flare-ups.

    Anyway, my question is - is it possible to flare if the medication seemed to be working? I know there's a thread already regarding how to know if you're flaring, but I couldn't seem to find that question in there. Also, is there a way to reverse the flare by resting or should I be giving my doctor a heads-up that I'm experiencing symptoms (they're milder than they were before but I don't know if they will get worse).

    Thank you!
    Sarah

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    Default Re: Can you flare if your medication seemed to be working?

    Hi Sarah! Definitely give your doctor a call. You may get an adjustment to your meds (more mtx or adding some pred back for awhile). Good luck!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: Can you flare if your medication seemed to be working?

    Thank you so much, Pete!

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    Default Re: Can you flare if your medication seemed to be working?

    Hi Sarah, it is possible to have a flare while on meds. Many times a flare can be the result of stress. Also weaning the pred might cause symptoms of flare or a flare. If your eyes are bothering you, please go to your eye dr. Eyes are too delicate to wait with.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Default Re: Can you flare if your medication seemed to be working?

    That is a really good question.

    I emailed my doctor today if there are tests (lab or at home) to monitor for relapses before it's too late and suffer lung/kidney damage.

    Dx on Sept 2017, also on Mtx (but pills) and gradual tapering Pred (from 60mg/day down to 30mg/day now). Symptoms do start to come back.

    I will relay whatever he says.

    Best of luck to you.


    Ed.

    P.D.
    My Dr. Replied:
    "In terms of organ involvement, we are assessing your blood counts as well as kidney and liver function tests every 4-6 weeks based on the standing laboratory orders that we have given to you for monitoring of potential methotrexate-related side effects."

    I take a blood test every month.
    My next step now is to find out how quickly can a GPA flare up damage lungs and kidneys.
    I'd like to find some test I can do at home weekly, or even daily.
    Last edited by seied; 10-25-2017 at 10:21 AM. Reason: Add info

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    Default Re: Can you flare if your medication seemed to be working?

    Ed,

    You can find urinalysis test strips at Amazon or your drug store. There are several kinds available that can test for blood, creatinine, etc. They can give you an indication that something’s wrong.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: Can you flare if your medication seemed to be working?

    You can flare while on maintenance meds or even a treatment dosage but generally the symptoms should be easier to get under control and the prognosis is a whole lot better to regain or attain a remission. Best wishes!
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Can you flare if your medication seemed to be working?

    Quote Originally Posted by seied View Post
    That is a really good question.

    I emailed my doctor today if there are tests (lab or at home) to monitor for relapses before it's too late and suffer lung/kidney damage.

    Dx on Sept 2017, also on Mtx (but pills) and gradual tapering Pred (from 60mg/day down to 30mg/day now). Symptoms do start to come back.

    I will relay whatever he says.

    Best of luck to you.


    Ed.

    P.D.
    My Dr. Replied:
    "In terms of organ involvement, we are assessing your blood counts as well as kidney and liver function tests every 4-6 weeks based on the standing laboratory orders that we have given to you for monitoring of potential methotrexate-related side effects."

    I take a blood test every month.
    My next step now is to find out how quickly can a GPA flare up damage lungs and kidneys.
    I'd like to find some test I can do at home weekly, or even daily.
    Ed, if you are anca positive, then your PR3 and C-anca rising up, can be one of the first signs for WG activity.
    Blood tests every 4-6 might be too far away if you suspect WG activity. If you feel that symptoms are coming back, ask for labs earlier.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Default Re: Can you flare if your medication seemed to be working?

    I have an order for my regular labs monthly or as needed so I can request them earlier if I feel I have symptoms that warrant them or I can wait a few weeks if things seem to be going good but try to get them done at least every two months. I only have the ANCA and related things done infrequently or when other labs or infection that indicate inflammation and suggest I might be starting a flare. I also use a urine dipstick test at times to check for blood in urine that might indicate Weg activity in the kidneys.
    Last edited by drz; 10-29-2017 at 08:30 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Can you flare if your medication seemed to be working?

    Quote Originally Posted by Alysia View Post
    Ed, if you are anca positive, then your PR3 and C-anca rising up, can be one of the first signs for WG activity.
    Blood tests every 4-6 might be too far away if you suspect WG activity. If you feel that symptoms are coming back, ask for labs earlier.
    I second this -----^^^^

    Stress is a big issue for us WG'ers. I hit a wall and get sick every time I push myself too far.

    Learning to pace ourselves can be a huge benefit to our health. Please take some time to sit and do nothing and get some blood tests ASAP
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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