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Thread: Had tracheal surgery

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    Default Had tracheal surgery

    Well I had my trachea stretched on Monday and loaded up with steriods. I am breathing better so I'm thankful for that. I don't sound so much like Darth Vader lol. Still coughing and can feel wheezing in my chest. Go see rheumy on Friday hopefully insurance has approved the rituxcin. Today is the first day of spring and I'm thankful for warmer weather. Cleaning a little and trying to save some spoons for this afternoon. Taking my daughter prom dress shopping.

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    Hi Seashells! This thread caught my attention as i am in a flare manifested thru my stenosis. Ive done 3 months of steroids and that helps with the shortness of breath and getting mucus stuck around the scar tissue. But as soon as i get down on pred, the symptoms return. So my dr is considering rituxan. Ive never had it. And my dr doesnt know much about how it helps with tracheal involvement. So im just wondering ur experience. Did u do rituxan before? Did it help? Are you on prednisone or maitanance drugs...srry for all the questions. I have asked these on here but i dont know that ive connected yet with someone going thru the same thing at this time. I cant have the dialation because my scar tissue is too close to my voice box. My ent says a tracheotomy might be his only option to give me more air.

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    I'm so blessed.....love the name. This is my 2nd time having the surgery. I've never done rituxcin before so I'm new to it also. I'm in a pretty bad flare at the moment. I'm on 60 pred and methotrexate injection on Saturdays. It has helped but still not good. My rheumy seems to think that it will help keep the inflammation down and keep the airway open longer. I'm hoping so. I'm sorry to hear you aren't able to have the surgery. That is one of my biggest fears. I've not really been able to connect with anyone either so it's nice to talk to you. When was you diagnosed? I was in Feb 2013.

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    I was dxed in 2001. So its been 14 years. I had kidney involvement at first so i did cytoxin. After the first 6 months ive stayed on imuran and used prednisone when i flare. I added methotrexate in december 2006 because my flare was not controlled with the others. Up until 2012, my flares were all joint inflammation. Then in 2012 we found the stenosis. I had one surgery, and thats when he found he was not able to baloon it. Instead he just "carved" some scar tissue away. He doesnt want to have to do that again. I had some relief after that surgery. But now since december ive been flaring again. I just dont know that prednisone is the answer since it seems to only mask the symptoms. As soon as im off they are back. So we will see. I see my rheumatolagist on monday to discuss my options. I had a very good dr all these years, but recently she moved on and i dont really know my new one yet. Anyway, im babbling. I would love to stay in touch on this!

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    So far my kidneys are good. I have some nodules but not a lot. I hate prednisone. I gain weight and sweat all the time. Just seems to mask the pain. Guess its the less of two evils. We went dress shopping today and now I'm done lol. Didn't find one so going again tomorrow. By tomorrow night I'll be more dead than alive. I'll try to post more tomorrow.

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    Sorry I haven't been back on lately. Been crazy with kids and work. I'm kinda nervous about tomorrow. I don't mind getting blood drawn but iv's I hate. My daughter is gonna go with me. She's gonna shop some but just in case I don't feel like driving she will be there. I was surprised cause what 17 yr old wants to spend their day like that. But she's a good kid. I'll let ya know how it goes. O pray it works. Might miss Good Friday services though 😞

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    Blessed I've had it since 2002 with renal involvement and have had rtx a few times now - annually with no issues. They give it to me before I have a flare up. And again good luck SS.

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