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Thread: Hi From Oz

  1. #81
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    Still waiting on results but dr wasnt able to access main granuloma due to inflammation so bad grrrr...hopefully with the samples near the granuloma and brushings and washings something can be made from though. Dont want to go through that again particularly. In a good note told i can now up my pred to 50mg...oh i feel alive again no pain ahhhh

    Sent from my SM-G900I using Tapatalk

  2. #82
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    Mark, not sure what to say here? Except,hope he can get something for ya, and as far as the pred upping, well ok, since you're pleased, that's really all that matters! Good luck, Mark... Debra...
    Live,love,and laugh...

  3. #83
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    I'm glad you finally had it done. Fingers crossed that the samples taken give an answer.
    Pain free, high on pred, is a great outcome from this little adventure - for the moment.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Quote Originally Posted by Mark76 View Post
    In a good note told i can now up my pred to 50mg...oh i feel alive again no pain ahhhh
    Be aware the pred high is short term, it results in a hard crash within a few days to a few weeks. Hopefully it will reduce inflamation, and if you have Wegener's it will slow or maybe even halt that damage. You can't stay at 50 mg forever so take advantage of it, get bitchy... get diagnosed...

  5. #85
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    I also have nasal issues. My nose is always crusty. I have been on prednisone for about 14 years. I can't seem to hit remission. Thank goodness I don't have lung or kidney involvement. Try to see a rheumy.

  6. #86
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    Finally been diagnosed with Wegner’s and starting treatment today with cyclo and rutiximab. Slight saddle nose i noticed today. Do most ppl leave the nose or does it get worse?

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  7. #87
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    Quote Originally Posted by Mark76 View Post
    Finally been diagnosed with Wegner’s and starting treatment today with cyclo and rutiximab. Slight saddle nose i noticed today. Do most ppl leave the nose or does it get worse?

    Sent from my SM-G900I using Tapatalk
    It's always been my intuition that cyclo given along with RTX might be a good idea, for starters. I'm glad your treatment is beginning. As for the saddle nose, it seems every case its a little different. If it is slight, I'd ignore it for now, see if the treatment will stop it from progressing. Some happen gradually, mine happened all at once and never got any worse. I may never get it fixed, although I'd like to.
    Anne, dx'ed April 2011

  8. #88
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    Yeah im glad ive started treatment too...yeah the nose is only just noticeable. First things first to get better...how soon after treatment do you feel better? Do many feel side effects from cyclo?

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    Hi Mark,

    It's hard to know if there was some placebo effect involved but I felt better about a week after my first Rtx infusion. After about 3 weeks, I notice a lot of improvement and I'm a big fan of Rituximab for this reason. I would imagine starting treatment ASAP should minimize new damage in your nose and prevent the saddle nose from worsening but, as we know, nothing is guaranteed. The most important thing is you're getting the treatment now so you're doing the best possible thing for yourself!
    Diagnosed October 2012

  10. #90
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    I think people vary in how fast they respond to RTX, for some it is quite fast and for others it could take months. That could be a reason for giving some cyclo at the beginning, to give things a kick start. It would make a difference, too, whether you have an infusion of cyclo or take it orally in pills. I never had RTX, and had cyclo in 100mg pills (determined by body weight), along with prednisone, of course, starting at 50 or 60mg/day, I forget. I split the daily dose of cyclo and it it caused some nausea and dizziness, which I got used to little by littlre , and was sleeping a lot anyway, so didn't notice it all that much. The prednisone provided some energy and a big appetite, and it didn't keep me from sleeping or make me feel too manic or hyped up as it does for some. Later, as I got to lower doses and had it been on it longer, I found the pred making me irritable sometimes. As for the cyclo, if you get it by infusion, it may be an entirely different experience. I did find the oral cyclo shutting down the disease activity and making me feel better within a few weeks. Some damage had already been done which was irreversible, due to a delayed diagnosis. Best of luck to you.
    Anne, dx'ed April 2011

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