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Thread: WG in remission

  1. #11
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    Default Remission with RIT

    Hi Gwenn!
    So glad to her that your in remission! We are working on mine...I have a very limited form of Wegener's with only my ears and trachea affected. I had severe ss in Feb. 09 and had to be trached as a result. Since then, I have been on 5 MTX weekly and Prednisone. This is our seconf time trying to taper the Pred. and seems as though 8mg is as low as I can get before my PR3(ANCA) becomes slightly positive again. I was just curious to know your story with RIT and if you could message me with more info, ie, how long you were on it, how often you took it, etc...I REALLY want this trach out, and seems like I need a new plan. I am willing to try anything, especially since you said it worked for you! Thanks, Nicole

  2. #12
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    Default

    How much pred are you on? My rhuemy is also a bit hesitant to lower my pred more than the 10 due to the same problem. I go back in Jan and will discuss it again.
    Lisa

  3. #13
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    Default remission

    hey lisa...
    I am on 8mg right now...suppose to taper to 7mg Friday, but Im scared ;( how are you

  4. #14
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    Default

    I am on 10mg pred now and 10 mtx. I am tapering very slowly by 1mg per month or even more. Last tiem I tapered too quickly and ended up on cyclo for a year. My cAnca is above 200 so they don't even measure how much. I do feel fine and so cAnca may not a good indication for me as to if I'm flaring or not. I am recovering from a cold which was mild, just have some coughing issues which hopefuly will go away soon. Don't be scared just take it very slow, even half the 1mg and take 8.5 for a month. Let your body get used to getting a little less.
    Jolanta

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    I am decreasing my prednisone 1 mg a month. I'm on 6mg right now and in Jan I will be on 5 mg of Prednisone. I think I will stay on 5 mg longer, since I have lung and sinus damage both pulm and ENT think that I will have problems if lowered under 5 mg of Prednisone. I will discuss this with my Rheumy Jan 5.

  6. #16
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    Default

    Hya Gwenllian
    I am having problems with my Trachea,recently been in Hosp for my windpipe to be dilated (via a balloon),am due to see a Rhematologist for the first time 05/01/10.I am currentley taking Cellcept but hopefully my medication will be reviewed on Tuesday i am going to mention Ritixumab to him.How does this medication work.
    I have had Wegeners Granulomatosis for nearly 7 yrs affecting my nasel space , my hearing,joint pain.
    Keep well
    Annette x x

  7. #17
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    Default

    Hey, there's a bunch of us tapering pred by 1 mg a month!

    I'm on 4 mg but won't start tapering until after the holidays-- keeping a promise to my JH doc because it's hard to get proper care if something goes wrong. He said to drop 1 mg a month and to stay at that dose for minimum 1 month and longer if I feel it's necessary. But NOT to drop faster than 1 mg/ month.

    I'll probably start by dropping 1/2 mg at a time and see how it goes.

  8. #18
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    Default

    I've tried to get below 10mg several times now and seem to have problems no matter how slowly I change so I'm resigned to the fact that I must stick with this level.

  9. #19
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    Default

    It is trial and error with Prednisone. Annette, wish you the best. I'm on cellcept too, along with cyclosporine and prednisone. Holding my own and hoping no flares. I know if I get a flare depending the severity of it I will probably have to be on the Ritixumab.

  10. #20
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    I did not know that cellcept and cyclosporine could be used together. I switched completely from one to the other (cellcept 720 mg/day) and have had no Wegener's flares since.

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