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  1. Re: Hello! Freshly diagnosed, New to the Forum, Here’s My Story.

    You have been through so much! Im sorry for your loss, I cant imagine...I am from central Pa, close to state college. I dr at Hershey. Just wonder if we live close at all?
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    Lung nodules

    Who all has had lung nodules show up on a ct? My report says 4mm nodule in upper right and 4mm nodule in right base. Compared with a scan done one year ago-there were no nodules then. Umm...my...
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    Re: Anyone have the same lung problem?

    Im so sorry your dr didnt take you seriously. That is very disheartening. I dont take it very well at all when that happens. I read that letter from the dr. He is very humble to admit what he did, i...
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    Re: Wegeners is back!

    yes thats what im told about my stenosis, that it takes on its own path...she is starting me on 12.5 mg of methotrexate. I had been on it and imuran together for 10 years, just imuran for 6 before...
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    Re: Wegeners is back!

    I "liked" your post, but i dont like that you have to go through that :sad:
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    Re: Wegeners is back!

    "I am a little disappointed that your new rheumatologist was not as understanding on what it’s like to have your life revolve around this, where is the compassion?"

    Right! Unfortunately,...
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    Re: Wegeners is back!

    I think im just fighting with reality. I have it in my head that maybe another dr would just let me go til id show signs of active disease..and maybe i could just stay off meds for awhile. But...
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    Wegeners is back!

    Let me be clear, i have no symptoms, and my blood work is great! Its just that, for the past year i have been off all immunosuppresents. And enjoying it oh so much! First in 17 years of this beast...
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    Re: Tracheal stenosis and remission (vs. esophageal stricture)

    Mostly by an ENT doing a scope would be my guess?? Thats how my stenosis was dxed.
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    Re: NYT article

    I so relate!! I was 16. And i was so inspired by the ladies who were so kind to me every month at the lab where they took my blood that i went to phlebotomy school and worked as a phlebotomist for a...
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    Re: Subglottic Stenosis

    My stenosis is so close to my vocal chords, they do not want to try another dialation. Actually, they didnt find it for 18 months after symptoms started, so most of my issue is scar tissue that they...
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    Re: Subglottic Stenosis

    I have had a stenosis for 8 years now. And am just now confident enough to know when i do NOT need steroids for it. As this would always be my ENTs way of treating the flakes that get stuck. Yes, i...
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    Re: New member. Newly diagnosed.

    My name is Amanda, and i am 33. How crazy is that! Hang in there! Its special that you have another forum member living so close! You 2 should connect. I have never had the privilege to meet a real...
  14. Re: Your experience with the healthcare system when you first began suffering from GP

    I was 16. I had a blood shot eye. Eye dr did short round of pred. Sinus infections. Dr did several rounds of antibiotics. Joint pain that landed me in the er 2 times. First dr said its growing pains....
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    Re: Hair Loss.....

    I did rituxan in february, my hair loss started in may. Its BAD. I had long hair i was proud of, but my husband gave me the go to cut it short in june because of how bad it was falling out. It still...
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    Re: Aiming for drug free remission...

    I was on imuran for 6 years, then added mtx. I took them together for 10 years. Then last august i did rituxan, and again in february. I have not been on anything but 5mg of pred since. It was def...
  17. I could'nt agree more. It's really not...

    I could'nt agree more. It's really not sensible.Cutting things out that are good for your body just for the sake of following a program??? Doesn't make any sense to me. At the same time, I'm sure it...
  18. How did this work out for you?

    How did this work out for you?
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    Wow Rachel, I see in your profile you have had...

    Wow Rachel, I see in your profile you have had wegs quite awhile!!! Can you share your story of how you got dxed? I wonder, if the cytoxen was administered differently back then, and thats why the...
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    I had taken them seperately, and then together...

    I had taken them seperately, and then together for 10 years. I prefer imuran as far as side effects. I was a stable slightly more tired, where with the methotrexate i got kicked pretty hard the day...
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    I havn't been posting for a bit either. I do miss...

    I havn't been posting for a bit either. I do miss it. I am kinda in limbo since i saw Dr. Villa Forte in march. She agreed i need a new rheumatologist but she will treat me from a distance until i...
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    Hi Lilly, Your symptoms remind me very much of my...

    Hi Lilly, Your symptoms remind me very much of my tracheal stenosis. Have you been scoped for this? I have very low energy and get the hot, dizzy, almost vomiting feeling if i do too much, which i...
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    My eye sight changes when i am tapering...

    My eye sight changes when i am tapering prednisone. Not every time. But i have had to change my prescription when it happens and the eye doc says it has to do with the pred. Not sure exactly what it...
  24. I did whole30 last may. It was not a pleasant...

    I did whole30 last may. It was not a pleasant experience for me-im sure you can see its tough to stay on. My dissapointment was that i actually felt alot worse expecially after the first full week....
  25. "If they decide to get off the drug train and...

    "If they decide to get off the drug train and employ the ~will to get well~" Hmm...dont we all wish it were that simple!!! Im sure hes right about some things, like the side effects, but when we...
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