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

  1. #171
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    You'll probably have to up your pred dosage at least to the dosage where you were before symptoms began. A few years ago, I got down to 3 mg/day of pred and started with roaming joint pain. I briefly went back to 40 (I think), had my first rtx treatment shortly thereafter. I got down to 5 mg/day and decided to hold there for the foreseeable future. I'm still at 5 mg/day. I see my rheumy on 9/29, and am going to ask about trying to taper off again.

    If you have an infection, I doubt that you'll get your rtx as scheduled. I hope you can get past it quickly and get the treatment you need.
    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

  2. #172
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    Your rheumatologist will order labs prior to your next treatment. This could be wegs vs infection. You can get low grade fevers with wegners flare. The ENT can do a nasal swab and get it cultured to see if you have infection. Sounds like it's attacking lungs and sinus. I had a horrible cough starting in May and it got better in July. It takes time for the rituxan to work . The prednisone will knock the inflammation down.
    Let us know how you are doing.

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  4. #173
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    So, how does one know if it has gone to the head? The reason I am asking is for the past year or so I get sharp pain in my head (not headaches) different just sudden sharp pain. I had brain aneurysm coiled about 10 yrs ago and they say mabye it's that. 3 months ago I had a MRI of the head (looking at the coiling) and I was told it looks fine. So not sure how they check to see if it's in the head or not? What test would show that CT Scan or MRI? Then last year my head felt funny went to the ER and they sent me home, the next day still dizzy and head pain and then when I got up to walk I just passed out and broke my wrist (November of last year). It just comes one and just goes away, it's so strange. But I can feel confused and things don't feel real around me. I just told my Rheumy last week about it and she said nothing. This is why I haven't driven in almost 9 months. I don't know when symptoms will come on. A bit scary I would say


  5. #174
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    Default Re: How to know when you're having a flare

    Some of my symptoms started reappearing about two weeks ago. Headaches and nasal crusts were the most prominent, my eyes required a lot more drops. They quickly became much more severe. I have messaged my Doctor and she said that I should get an infusion of Rituximab now rather than the scheduled 3 weeks from now.
    I looked for the definition of flare. one of them is:
    "to start up or burst out in sudden, fierce intensity or activity"

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  7. #175
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    Default Re: How to know when you're having a flare

    how high did your anca get Andrew? my mom's is now 4.1 this is her first reading.

  8. #176
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    Default Re: How to know when you're having a flare

    For me, I feel like I ran into a brick wall. My ears go through pressure changes even though I had tubes put in for the Eustachian damage. I'll get some nose bleeds, extreme general malaise, pain in the joints and muscle aches and I generally feel like I've gone from 'current age' to 96. I will dose to either 40 or 60mg of PDX depending on how severe and how far along I am and get on the schedule for an RTX infusion as soon as possible. I usually don't progress beyond that before I am on the PDX. But my GPA is very aggressive when it comes back and so I try to stay on top of it and get on medications quickly.

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  10. #177
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    Default Re: How to know when you're having a flare

    This art of knowing when you’re having a flare is tough. I’ve been most successfully treated with Rituxan, last series of 4 infusions was in January of 2018. Since Rituxan is the best drug for me I’m forced to return to that for treatment. This flare began suddenly 5 weeks ago with severe worsening of Polyneuropathy, return of Sinus issues and a cough that won’t clear up, a headache, inability to sleep, and signs of brain, cranial nerve involvement, plus extreme fatigue, pain, etc - all Of which have kept me in bed. In May of this year I was hospitalized for a month with seizures that nearly killed me, an intensive care stay on a ventilator, and pneumonia. The cause of the seizures hadn’t been identified and I remain on two of the seizure meds out of the three it took to control them. I was on a drug called Vimpat which seemed to help quite a bit - but my Vanderbilt neurologist refuses to keep me on it. No one here in Nashville is able to help so far and next week I’m flying to Los Angeles to see the Rheumatologist who seems to be able to recognize and treat a flare with Rituxan. Since none of my inflammatory markers are up it is difficult for most doctors to recognize what is happening with clinical signs alone. Hopefully this helps some of you who are in a similar situation.

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  12. #178
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    Default Re: How to know when you're having a flare

    Hi Kwnorton,

    Did the Drs say that you can have Rituxan since you've had seizures? I do know a few people who have had seizures and the Drs often do not know the cause, but the one thing that these people did have in common was sleep deprivation. If they were overworked and short on sleep, they were prone to seizures.

    Hope you're feeling better soon.
    -Susan

  13. #179
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    Default Re: How to know when you're having a flare

    Quote Originally Posted by ST316 View Post
    Hi Kwnorton,

    Did the Drs say that you can have Rituxan since you've had seizures? I do know a few people who have had seizures and the Drs often do not know the cause, but the one thing that these people did have in common was sleep deprivation. If they were overworked and short on sleep, they were prone to seizures.

    Hope you're feeling better soon.
    -Susan
    The Drs (at least the ones I go to) do say I can have Rituxan. I didn’t happen to be sleep deprived or overworked when I had seizures. I’ve had a history of CNS Vasculitis & cured with Rituxan although the Nashville hospital where I nearly died of Status epilepticus was clueless when it came to their crude attempts to diagnose me when I was unconscious. Moral of this story, don’t allow yourself or a loved one to enter a hospital where they’re unprepared to understand your primary health issues.
    Feeling miserable in Los Angeles today.

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