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Thread: Finally decided to reach out...

  1. #21
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    The only ENT I have ever really liked is the one I have now, Dr. Lebovics, who always says "I'm just the plumber." He really downplays the advances that he has brought forward in the study of weggies -- an incredibly humble man. I think that the doctors who try to hide behind the bravado and "I know ALL, I went to med school" are the scariest ones.

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    My Wegs ENT at JHU is the same way-- very humble, calls himself "the plumber who answers to Dr Seo." I imagine the Wegs ENTs at the vasculitis centers are just like the Wegs rheumys there-- no big egos.

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    Hello~
    I too have SS but not very severe, I haven't had any surgeries to correct it. I used to cough and cough and cough. I also had tried everything that you mentioned. I was diagnosed in Sept 2009 and started on methotrexate and prednisone. I have mostly sinus involement and a little lung involvement. The methotrexate helped the lungs but didn't do anything for my sinuses so I had to start Rituximab. I do not cough nearly as much as I used to! I am still on 20 mg of pred, I hope I can wean off and stay healthy.
    When I was pregnant in 2006, I too had the best pregnancy!! No problems and I felt great. A few months after having my son, my symptoms started again. (this was all before I knew I had weg)

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    How are you feeling, Brooke? Do you notice any improvement since starting rtx?

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    I am feeling good, thanks Sangye. I was feeling pretty good going into the infusions so now it is hard to tell. I don't think I will know for sure until I can lower my prednisone. I am not supposed to start lowering until next week (going from 20 to 15 mg) but I was getting so frustrated with my weight I tried 18 mg this week. So far so good, I still do my sinus rinses and my nose feels dry and crusty still so I don't know how it looks on the inside.
    I walked another 3 miles on our treadmill on Tuesday and did great with no coughing or anything but then yesterday I felt very tired all day. Maybe I over did it walking 3 miles? Last night I did a 20 minute walk outside and I feel much better today.

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    Brooke, please be careful lowering pred too soon. When I did my first round of rtx in October, I assumed I could start to taper the pred soon after. My Wegs doc said no way. It takes the rtx several weeks to really kick in. I was really impatient but I listened to his advice. I couldn't tolerate the taper until after the second round in March. Remember, "Slow but steady wins the race" with Wegs.

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    Yes, Brooke - slow and steady. I think you overdid it on the treadmill. Please, don't do that to yourself too soon. I was so anxious to be cured by the Rituxan that I overdid it, as well. I'd take one step forward, one step backward, on and on, for months. I finally feel like I'm taking 1 step forward at a time now...and that's after 4 months. I also did a long walk in April and injured my hip ligaments the next day - just by twisting my foot on the ground, no weight bearing.

    Listen to Sangye about tapering prednisone. She is now the QUEEN OF THE TAPER. You must slowly sneak away from that crap before it wakes up, rears its' ugly head, and tries to snatch you back into its' ugly maw.

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    LOL-- I didn't know I'd been crowned!

    But really, who has tapered more slowly than me in the history of Wegs? Maybe there's someone else out there splitting 1mg pred pills into fourths, I don't know. I've questioned myself a number of times-- do I really need to go this slowly? But the answer is there in black and white in my daily log-- every single time I've dropped by 0.25 mg I have temporary symptoms. That Wegs dog can be a light sleeper.

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    Thank you Lola and Sangye -
    Sangye - What dose were you on in October? What dose did you drop to when you realized that you were not able to tolerate being lowered yet? Did your doctor tell you that since you couldn't tolerate being lowered that you need another round of Rituxan? Is that why you had another round in March?
    What are your current symptoms?
    I'm sorry Sangye I should know this, but what all Wegs involvement do you have again? I know you have lung involvement.

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    My main involvement is lungs (hemorrhaging and a few small granulomas), joint pain, profound weakness and fatigue. In the past year I've developed a little nose involvement, but nothing like typical Wegs. I've also had major skin ulcers in the past. I've had a huge amount of complications that cause at least as many problems as the Wegs!

    When I started rtx in October I was on 4mg pred and my lungs were hemorrhaging again. (I was still on ctx, even though we knew it was killing my bone marrow.) The infusions lasted all of October and since the rtx doesn't start working for 6 wks (mid-November) my doc said to wait to taper. I kept emailing "Now?" and he kept answering "No!" It was hilarious. By mid-December he said I could technically start tapering, but wanted me to wait until after the New Year in case I got into trouble over the holidays. I tried tapering in January, but no matter how slowly I went, I got sicker within a couple days--coughing up bits of blood, joint aches, etc.... Even without the taper I wasn't feeling that great.

    We were going to do another round of rtx in April, but I could feel myself slipping and asked to do it in March. The first round had put out the major fire but the Wegs was still fairly active. The second round seems to have really contained it for the first time ever.

    I started tapering pred from 4mg in April and am currently down to 1 mg. I should be off it within 3 weeks.

    My Wegs is called "refractory" because it's been unresponsive to all other treatments. The lung hemorrhaging also categorizes it as "severe." I'm going for new labels: "Highly responsive" and "No evidence of disease."
    Last edited by Sangye; 06-05-2010 at 12:10 AM.

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