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Thread: is this a sinus flare op?

  1. #11
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    That might indicate the cellcept was holding the Wegs down and when it stopped things got worse. You should be able to get labs right away at several sources, local clinic, hospital, ER, or a Walk IN clinic. Any doctor can order the right tests if you tell them want to check for Weg activity now. Remember though that one's symptoms are generally a better indicator of active Wegs than any lab work.

    Quote Originally Posted by splummer View Post
    That's when the Doctor scheduled the blood tests but we'll call on Monday and try to get things moving sooner. The Doctor seemed more concerned that the 2 liver tests went up last month and had her stop the cell-cept maintenance drug. Her liver function test improved after that but the sinus pain started about 2 weeks ago and are getting worse.
    Knowledge is power! Wisdom is using it to make good decisions!

  2. #12
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    since im under treated
    Deb, what do you mean "under treated"? I don't understand that? Aren't you seeing a doctor? What drugs are you currently on? Or in the past for that matter?

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    I want to thank every one for their help in trying to figure this out. I think people who have lived with wegeners have a better insight than even the best Doctors. After reading all your comments, I think the cel-cept was holding the sinus problem down and going off of it may have triggered a flare up 2 weeks ago. She needed to go off the cel-cept because after 2 years it was suddenly raising her liver numbers. [It's been a hard 2 weeks] but we will know what to tell the doctor Monday Morning. [That we are positive that it is a flare up.] Her last complete tests were only 10 days ago showing C-anca at 6.2, inflamation 1.4 and liver almost back to normal.

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    Quote Originally Posted by splummer View Post
    Max, do you know if the W. sinus treatment you had is the same as the treatment for other area's. In her case for the kidney it was predazone and 4 infusions of Rotexan. We will be calling the Specialist on Monday morning again. My wife also is concerned about it causing more damage if they don't take care of it soon.
    Yes, I had the same treatment - prednisone and 4 infusions of Rituxan. Btw, relapses are more common with sinus involvement so maintenance therapy following remission is most important.

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    Update, We got in to see the Doctor right away but had to make a few phone calls with the office explaining how urgent it was. It's 2 days later now and we are waiting for a call with the infusion appointments. [two infusions of rituxan a week apart.] My Wife has read all your comments but not feeling well enough to post. We didn't know sinus flare ups were so painful and tests and xrays don't show much. When she had her kidney flare up there was no pain and we only knew about it because of the tests.

  6. #16
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    Quote Originally Posted by splummer View Post
    Update, We got in to see the Doctor right away but had to make a few phone calls with the office explaining how urgent it was. It's 2 days later now and we are waiting for a call with the infusion appointments. [two infusions of rituxan a week apart.] My Wife has read all your comments but not feeling well enough to post. We didn't know sinus flare ups were so painful and tests and xrays don't show much. When she had her kidney flare up there was no pain and we only knew about it because of the tests.
    Glad you got it worked out. Sorry I didn't chime in earlier. Sinus flare ups can be debilitating; I know first hand. At one point, I was taking three different Rx pain killers, and that wasn't helping much! Finally, my ENT went on a rampage to the Rheumy's office and low and behold, four months of agony were taken care of with my first round of Rituxan.

    I owe my ENT for a multitude of saves over the years. He and I are good friends now! I think he likes me because I helped buy him a sailing trip! (-8 LOL!

    I hope that things will start to improve very soon for BOTH of you!
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


  7. #17
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    MikeG, is that when you first found out about you Wegener's?

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    Quote Originally Posted by splummer View Post
    MikeG, is that when you first found out about you Wegener's?
    No, I had a diagnosis in 2012 and most of my symptoms up to that point were Wegener's related. I do know that now!

    I was treated with the standard starting protocol of Cytoxin and high-dose pred for 6 months, then went on Mychophenolate for 16 months, and then a BAD sinus flare-up, which was lungs again too. That flare-up was twice as bad as my original 2012 symptoms. This time, I'm still doing RTX treatments, and doing OK now.

    Does that answer your question?
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


  9. #19
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    I'm glad your doing ok now. It seems like the sinus flare-up at least for her has been the most painful of all. Now we're waiting for Blue Cross to approve the rituxan.

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    Quote Originally Posted by splummer View Post
    I'm glad your doing ok now. It seems like the sinus flare-up at least for her has been the most painful of all. Now we're waiting for Blue Cross to approve the rituxan.
    Yes I too can agree with the pain. Not even highest dose of Oxycodone would touch it. In the end before wg diagnosis the only thing that helped was sitting in shower for hours on end with water on my face. Its a terrible way to live!! The first dose of 500mg prednisone and cytoxan brought instant pain relief. Its been 4 weeks after treatment with cytoxan and rutiximab and nomore pain however still have fluid in sinuses and ears which is annoying but hopefully eventually it clears. Good luck with your flare up

    Sent from my SM-G900I using Tapatalk

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