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Thread: It's definitely a flare up

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    Default It's definitely a flare up

    Hello everyone. About six weeks ago I posted that I was going back on the pred to see if the sinuses would calm down, and after the taper if they stayed OK, all was good. Well, it's back to flared up again. Yesterday, I had so much facial pain I couldn't hardly walk. All I wanted to do was crawl in bed and cry. My wife took me to the ENT at 7:30 am and he said since last Thursday, they were really bad again. I was also coughing and wheezing, so he ordered a chest X-ray, and something there gave them a enough of a worry that today I have a lung CT scan scheduled. Pain is almost under control now that I have a pain patch on my arm. It helps that I've spent the last 18 hours resting and/or sleeping finally too.

    All indications point to a Wegeners flare up, even though the ANCAs are all still good.

    so if you area the praying type, say one today for me will you, please?

    MikeG-2012

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    Hope your docs can get the pain and this flare under control pronto.
    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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    So sorry to hear this, and I hope they can do something to control the pain and get you headed back into recovery. I know ANCA's can look pretty good but you can still be flaring, because this happened to me. Will say a prayer, in my way.
    Anne, dx'ed April 2011

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    I'll be praying very hard for you!!!
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

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    Update:

    CT scan showed significant lesions from Wegeners again. I start emergency Rituxan infusions in the morning. Good news is that since my deduct able and out of pocket are reached for this year, insurance should be covering all of it. That said, I'm still pretty scared at this point. The plan is for a treatment a week for the next four weeks. I was told to expect to be off work for about a month. Does that sound reasonable to those of you who have had RTX? Do I need to be off that long?

    Can any of you give me real world expectations of what I might go through in the next week or month? I'd like to have some clue as to what to expect. Doctor gave me a few from the med side effect list, but I thought some of you might be able to give me a little more specifics. (Day 2 - crash, etc,)

    thanks for for the kind thoughts and prayers, all we're appreciated!!

    Mike

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    Hi Mike,

    I've just completed two rtx infusions (two weeks apart). I had no side effects while the infusions were administered. I was just a little more tired than usual the next day, but not so tired I couldn't do what I usually do. Two days after the first one found my wife and me driving almost 600 miles to Memphis. Three days after the second, we drove 350 miles to central Illinois for a wedding.

    I was given solu medrol (steroid) and ibuprofen with both infusions. Since I take a daily antihistamine, they did not give me Benadryl.

    I am generally able to tolerate meds with no difficulty. Rtx was no exception.

    Having said the above, I'm retired, so I can avoid sick people who might share their germs with me. Sounds like your doc may be giving you a worst case scenario.
    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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    If you are getting 4 infusions to treat a flare most likely you will feel like crap after the first infusion then feel good after the 4th one but everyone is so different so there is no way of telling.
    Phil Berggren, dx 2003

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    Hi Mike,
    I feel for you, I know it can be too scary to have a flare and also to be before the unknown of the RTX. I was also madly frightened. but I can tell you that you can go and have it peacfully. if you have someone you can trust to hold your hand, then it is much easier. we are also holding your hand.
    the day of the infusion is just long and can be boring. you will be there about 7-8 hours. the meds are making you very sleepy so in most cases and if you are calm enough you can just sleep untill it is over.
    the only reaction I had was lowering of my blood pressure so I drank a lot and ate chocolate to elevate it.
    the day after, I was already working. but because I had to. If you have a choice it is better to rest. all that month I was feeling exhausted and aching. but maybe because I didnt rest enough.
    and remember that the outcome is very favorable. RTX is a miracle. it clears wg symptoms amazingly.
    good luck and update us.
    I am sending you my praying
    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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    Quote Originally Posted by Pete View Post
    Hi Mike,

    I've just completed two rtx infusions (two weeks apart). I had no side effects while the infusions were administered. I was just a little more tired than usual the next day, but not so tired I couldn't do what I usually do. Two days after the first one found my wife and me driving almost 600 miles to Memphis. Three days after the second, we drove 350 miles to central Illinois for a wedding.

    I was given solu medrol (steroid) and ibuprofen with both infusions. Since I take a daily antihistamine, they did not give me Benadryl.

    I am generally able to tolerate meds with no difficulty. Rtx was no exception.

    Having said the above, I'm retired, so I can avoid sick people who might share their germs with me. Sounds like your doc may be giving you a worst case scenario.

    Thanks Pete. That is what I was looking for. I'm a pretty strong person as a whole, so I hope my experience is like yours. I think the four in four weeks, doc may be guarding me a little from my job on a college campus. Although I am put of main stream traffic of the college, I still work where there hundreds of people every day.

    Thanks for the reply!

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    Hi Mike, we just post here at the same time
    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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