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Thread: Less Severe = Shorter Remissions

  1. #41
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    Sorry to hear that Nickki
    ~ Bob

  2. #42
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    Quote Originally Posted by NikkiNicole View Post
    Hi! While I have not gone back on my medications, I feel like I relapsed fairly quickly. I obtained remission via medications (MTX) and diet. I slipped off the diet, and the symptoms came back. My doctor is out until the 17th (new baby) so I have been trying to maintain some semblance of normal until then but ... I have come to accept that I am no longer in remission.
    I have major nasal pain, scabbing, nosebleeds, and a very very very tender right nostril like ... don't touch it. I am extremely fatigued and run down. I feel like I have the flu daily. I am trying to continue moving forward, but I am trying to also not kid myself that I am not in as good a shape as I was a couple months ago.
    I am starting to get my diet back under control and hope that helps.
    I didn't have a long remission and my symptoms were not severe. I don't know if that counts.
    Sorry to hear your Wegs is acting up again. I hope you get it back under better control and feel better soon.

    Relapses during the first year or two of treatment are probably the norm but tend to be partly controlled or reduced in severity by being under treatment with meds to reduce Wegs while you usually slowly move toward remission. Once you are correctly diagnosed with Wegs it is also a lot easier for you and your doctors to recognize a flare when they occur after you finally attain a remission and to begin proper treatment in a timely manner. Some people have great difficulty attaining a state of remission and may only show a substantial or significant improvement without attaining a solid state of remission or have frequent and on going relapses.
    Knowledge is power! Wisdom is using it to make good decisions!

  3. #43
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    Quote Originally Posted by Psyborg View Post
    ...At least in my case it seems to fit.
    Fits me too. I was most severe, nearly died, isolated mostly to lungs, with some other symptoms.

    Yet I did very well, It was 10 years before my next flare.... Including 5 years with no medicine whatsoever!

    I am so sorry for those of you who deal with the "chronic" version!! that is so so hard.

  4. #44
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    My dr said i was 2 weeks shy of kidney failure when i got my dx. In 14 years ive had had around 10 flares. Mine is chronic, smoldering. I guess we are all different.

  5. #45
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    Dr Jayne has told me that those with sinus involvement are likely to flare within 2-5 years. If you go over this time you are likely to have a long remission. If you flare within 2-4 years then you are likely to always flare within this time frame. I was flaring for god knows how many years before diagnosis. When diagnosed I was treated with MTX but it didn't bring my symptoms under control. I was then given a course of RTX which gave me remission. I then flared after 2 years so I fit into this category.
    I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps. Jack

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