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Thread: Remission - what does it feel like?

  1. #21
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    wow, max, 70% down to 3% is a huge improvement without some kind of other maintenance med and all the side effects that comes from them!

  2. #22
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    That's why docs say that Rituxan and other mabs (monoclonal antibodies) have radically changed the practice of rheumatology.

    All cheerleading aside, these drugs may not work for everyone or for other vasculitides. Also, the long term side effects remain unknown and the use of Rituxan for maintenance is an art.

    Quote Originally Posted by mrtmeo View Post
    wow, max, 70% down to 3% is a huge improvement without some kind of other maintenance med and all the side effects that comes from them!

  3. #23
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    Quote Originally Posted by MaxD View Post
    That's why docs say that Rituxan and other mabs (monoclonal antibodies) have radically changed the practice of rheumatology.

    All cheerleading aside, these drugs may not work for everyone or for other vasculitides. Also, the long term side effects remain unknown and the use of Rituxan for maintenance is an art.
    That's right.
    We have no idea of the consequences of genetically engineered biologics in the long term.

  4. #24
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    Quote Originally Posted by mrtmeo View Post
    That's right.
    We have no idea of the consequences of genetically engineered biologics in the long term.
    Absolutely true. Alicia is living, breathing proof that it can work, but everyone has different symptoms relating to their Wegener's and may react to the treatments differently. I think we can be cautiously optimistic and keep monitoring the drugs and their side effects in the short and medium term.

  5. #25
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    At age 18 when I first got Wegeners, drug induced remission and full remission felt GREAT! I had my ups and downs but overall I did very well on the medicine. Started a new job within 3 months of "learning" to walk again. Back to college. I came off the medicine after having good bloodwork for year after year of consistently feeling very good with no symptoms.

    Fastforward to age 28 when I got my first flare... I find that the medicine makes me sick when it didn't before, I get cyclic vomiting very easily. My stomach is sensitive. I'm tired-er.
    Well... I guess it's natural aging! My bloodwork looks good and I'm on track like last time. But I do feel different. Not as strong as I used to be. Maybe it's because I'm not as active as I was as a younger person. But somehow I'm more fragile now.

    I guess everyone is different. I think when it comes time for your remission, you'll know when it's right.

  6. #26
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    I was dx over 20 yrs ago. I was in remission for about 10 yrs then now I have a severe flare..remission is possible but a slow process. When you reach that point you will start to feel more like your old self again. I was off meds and no maintenance. It can happen.

  7. #27
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    I was in remission for 25 years and felt back to normal. I then had a small flare a year ago, they don't seem to know why it happened after all those years. I'm now on maintenance meds, cellcept and 2mg steriods. Have some good days some bad days especially when reducing the steriods.

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