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Type: Posts; User: Meredith

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    Wegeners and now CLL

    I have had Wegener's for approx. 13 years. Have been on all meds to control with the best results on Rituxan and Pred. the Rituxan kept the CLL (Chronic Leukemia under control (have had for 3...
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    Re: Rituxan for airway involvment

    Since being on Rituxan I have not had to have my windpipe stretched (3 to 4 times I had to have it done). I do have mucus/coughing in the mornings - usually I am able to take care of it within an...
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    Not feeling well - flare?

    It has been a long 2 months - first started as a sinus infection late November. Took meds. Then I came down with the stomach bug Dec. 23rd. Really sick with it. After Christmas I came down with a...
  4. My ENT has done the SGS procedure on me 3 times -...

    My ENT has done the SGS procedure on me 3 times - in the hospital as an out-patient. I went from not being able to breath normal to no problems. Since I have been on Rituxan I have not any problems...
  5. My specialist said no live vaccines. I am on 5mg...

    My specialist said no live vaccines. I am on 5mg predisone and Rituxan every 6 months (2). When I went to India for work I only got vaccines which did not have "LIVE" viruses. I did get shingles 2...
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    Just got back from the CLL doctor today - white...

    Just got back from the CLL doctor today - white count is up to 21,000. He did not seem to concerned. Will monitor me with some new blood tests (guess they can look at the cells and do some...
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    Wegeners and CLL - just scared today

    I have had Weg's for approx. 9 years now. Been on multiple medications. RTX off and on for 3 years. This year they diagnosed me with CLL (chronic leukemia). Now I have to deal with that. They...
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    Exercising - prednisone

    Just joined the YMCA and will attend my first swimming class today. Walked and rode a bike on Wed. Tired of the weight gain over the past 9 years since I was diagnosed with WG. Will see how I do. ...
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    Breathing - can be scary. Just went to my ENT he...

    Breathing - can be scary. Just went to my ENT he said things look pretty good, some scaring still showing. I have a close relationship with him because of all my problems even hugged me on Friday. ...
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    Had to have my windpipe stretched 3 times - since...

    Had to have my windpipe stretched 3 times - since being on rituxin it has taken care of the probelm. Still see my ENT but for 3 years now everything has been fine.
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    I had a Tetanus before going to India 2 years...

    I had a Tetanus before going to India 2 years ago - no problem.
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    I have had Weg. for about 8-9 years now - was...

    I have had Weg. for about 8-9 years now - was just diagnosed with CLL - they think I have had it for a long time. The Rituxan treats not only Weg. but CLL also. Besides feeling tired I really...
  13. Rituxan - already had 4 infusions now I have swelling in my feet and one leg

    Just finished my Rituxan infusions (4) a couple of weeks ago. 3 days ago my feet and left knee became swollen. I am coming down off pred's. now on 10mg. Anyone else have this issue. I have been...
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    I had the flu - my throat (I HAVE THROAT PROBLEMS...

    I had the flu - my throat (I HAVE THROAT PROBLEMS HAS TO BE STRECHTED) started closing up and I knew I was in trouble so went straight to the ER. Showed up in an x-ray that I had pneumonia in my...
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    After 2 weeks of my arm hurting it seems better,...

    After 2 weeks of my arm hurting it seems better, went to the Ortho doctor and he said it was tendonitus. Gave me pain pills and some kind of prescription cream to rub on it. I would like to say I...
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    No pain in joint and if I put pressure on it it...

    No pain in joint and if I put pressure on it it feels better. It is about half way between my shoulder and my elbow and it hurts in one spot. No coughing or anything. Am on Pred (5mg), bactrim,...
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    Hurting - Flare up?

    for the last week I have had pain in my left arm 3" above my elbow - I helped my daughter move, I really did not do a lot, but the pain started the next day and it comes and goes. I have been pretty...
  18. Thread: Smoking

    by Meredith
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    Smoking

    I wondered how many other Wegener patients grew up in a household that had smokers (my mother smoked while pregnant). Both of my parents did. Later on after I got married my mother-in-law did...
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    caught the flu

    Came down with it last Friday night. Came to hospital Sat. morning about 4AM when my throat started swelling from the coughing. When I arrived my heart rate was 135. Admitted and now after 4 days...
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    Went to the Oncologist/Hemo before Christmas -...

    Went to the Oncologist/Hemo before Christmas - took 8 viles of blood to run the test on my low platelet count. Went today and got results, everything is normal - liver, etc. so he wants to just...
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    Low Platelet Count

    Have doing great lately but after going to the doctor last week for my regular visit the labs showed that my platelet's were dropping. The nurse called and they are going to send me to a blood...
  22. Thread: Ear tubes

    by Meredith
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    I had tubes put in when I was first diagnosed -...

    I had tubes put in when I was first diagnosed - approx 8-9 years ago. Have not had to have them replaced once they fell out. I do see my ENT every 3 months mainly due ot the throat issues I had but...
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    It was my understanding that it takes about a...

    It was my understanding that it takes about a month for Rituxan to start working - it is not immediate. Last year I had my last treatment on Friday and headed to Florida (Disney for 10 days). Only...
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    I have been on Pred on and off for 9 years - on...

    I have been on Pred on and off for 9 years - on .5 now for 1-1/2 years. finally feeling better, no pains in the legs anymore. the doctor moved my appt. so I don't see him till November. I will be...
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    Knee/Leg Pain - Traveling Pain

    I have felt the best in the last few months than I ever have since I was diagnosed. In July I went to the beach, rode bikes, walked on the beach, even ran once when I was looking for my...
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