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Thread: How to know when you're having a flare

  1. #181
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    Default Re: How to know when you're having a flare

    Quote Originally Posted by elephant View Post
    I don't know how to start a new thread so here it goes. How do you know if you have a cold or a WG flare. I have sinus involvement, so it is so confusing. Feeling more stuffy and sinus pressure in my left maxillary. Doing the nose rinse and no green/ yellow. A little more tired. If it is a cold how long does it take for it to go away? Since we are all on immunosuppressant medicines, I know it takes awhile. In the last 4 days, I feel my "cold" is not getting better. So confusing?? It's harder when you try to diagnose yourself.
    I have GPA that's really been limited to the nose and eustachian tubes. In my case, the question I have had is "how do I know if I am in remission or not?" The short answer is: in my case it's difficult to know. My rheumatologist looks more at my subjective symptoms, my general blood work and urine tests as more indicative of health than the ANCA specific blood work. He is of the opinion that PR3 and C-ANCA levels are imperfect with little predictive value when it comes to flares or assessing actual disease activity. After all, blood tests are a snap shot of a moment in time anyway. In my case, my C-ANCA oscillates between positive and negative every three months or so, my P3R levels are sometime 1/4 of what they were when I was diagnosed or almost as high. Symptoms have remained steady and associated with the initial damage done (eustachian tube dysfunction, some hearing loss, saddle nose deformity, occasional bouts of fatigue). I have had a cold since being diagnosed two years ago: it started as sore throat, slight fever, runny nose peaked in a couple of days and done a few days after that. Nothing like the month long onslaught of mucous production, fatigue and night sweats I had when I first came down with GPA. I think you just have to give things (whatever they are) a few days to run their course...if they don't clear up, then consider getting looked at. (I had both my hips replaced last summer (6 weeks apart) and was expecting to maybe have a little nosedive then from the recovery process, but so far so good.)

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    Default Re: How to know when you're having a flare

    How is a flare different from a relapse? I was labeled as "in remission" in Oct-Nov last year. Since I have had good blood work, but recently having a bit of joint and muscle pain again along with fatigue. Thoughts?!

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    Default Re: How to know when you're having a flare

    Personally I think remission is a subjective term as it applies to GPA and varies by doctor. My doctor doesn't use the term.
    My GPA is under control using RTX. Sometimes I show symptoms going into an infusion and sometimes I don't. When I do, I bridge with PDN to get me to the infusion and then I taper off.
    I have talked about alternative treatments but as my doctor states, "the disease is under control with RTX and we don't want to risk losing control. "
    Is there really such a thing as remission when you are still being chemically treated?


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  5. #184
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    Default Re: How to know when you're having a flare

    [QUOTE=gunnyl;117843Is there really such a thing as remission when you are still being chemically treated?[/QUOTE]

    I'm no longer getting RTX infusions. My ANCA numbers have been negative for the past 9 months. This is why I was curious to the groups thoughts.

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    Default Re: How to know when you're having a flare

    Quote Originally Posted by [email protected]$0N View Post
    How is a flare different from a relapse? I was labeled as "in remission" in Oct-Nov last year. Since I have had good blood work, but recently having a bit of joint and muscle pain again along with fatigue. Thoughts?!
    Roaming joint pain was an indicator of an impending flare for me when I was tapering off pred too quickly. I did manage to get off pred and still keep the disease under control. It took nine months to taper from 5 mg to zero, but Iíve been off pred for four years. My blood work is stable only showing symptoms of stage 3 kidney disease (elevated creatinine and low eGFR).
    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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  8. #186
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    Default Re: How to know when you're having a flare

    Quote Originally Posted by [email protected]$0N View Post
    I'm no longer getting RTX infusions. My ANCA numbers have been negative for the past 9 months. This is why I was curious to the groups thoughts.
    I have been on low dose weekly MTX, Bactrim and Folic Acid for 4 years now. My rheumy and I regularly look at some objective measures: basic blood work and urine monitoring (kidneys staying well? liver handling the meds, OK?etc ) the subjective measures of how I feel are the more important take on the disease activity.

    The ANCA-C is negative half of the time and just at the positive titre the other half of the time. PR3 has been low, but still positive, for a year. Even when both were positive and high, after the initial onset, I felt fine generally. I am happy the numbers are "better" but the literature isn't really conclusive on either ANCA panel being much use for predicting flares (and I have friends who have flared shortly after having negative ANCA panels) so if you are feeling pretty good that is perhaps about as good as it gets for as long as it lasts. My doc and I last year cut the ANCA panels back to twice a year instead of every three months.

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    Default Re: How to know when you're having a flare

    All of my other blood work is good as well.. its a bit harder for me to tell since it affected my aorta and hadn't reached the other organs yet. I also have 4 protruding discs in my neck and degenerative discs in my lower back. I've wondered if the wegs caused a bit of nerve damage.

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    Default Re: How to know when you're having a flare

    My doctors have told me i was in a drug induced remission when my maintenance meds kept the GPA under fair control to the point i did not need a more aggressive treatment like RTX. i still had some residual symptoms that would wax and wane and these required changes in my maintenance meds of AZA and Pred at times.
    Knowledge is power! Wisdom is using it to make good decisions!

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  12. #189
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    Default Re: How to know when you're having a flare

    My ANCAs are negative but the problem is that when it emerges I will be in the hospital before my labs can catch up with the symptoms. The longest I have ever made it between infusions was 10 months and then I felt like I hit a brick wall. Been on a continuous 6 month cycle since.


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    Default Re: How to know when you're having a flare

    Quote Originally Posted by drz View Post
    My doctors have told me i was in a drug induced remission when my maintenance meds kept the GPA under fair control to the point i did not need a more aggressive treatment like RTX. i still had some residual symptoms that would wax and wane and these required changes in my maintenance meds of AZA and Pred at times.
    Just to make sure Iím on the same page.. RTX is Rituxan, correct? How many initial doses did you have? My body couldnít handle AZA and was tapered off prednisone after a few months of RTX..

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