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"
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.
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.
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.
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
Re: How to know when you're having a flare
Quote:
Originally Posted by
ST316
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.
Re: How to know when you're having a flare
Quote:
Originally Posted by
sumsum5587
hi, im Summer. I have wegener's too. i found out in march. How do you know your having a flair up?
Summer, I take Rhituxan infusions twice yearly and am doing great. I developed WG in 1981. I have had 3 flares since then. The last one was in 2010. I am 72...so there is hope.