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Type: Posts; User: JeanMarie

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  1. Replies
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    Re: GPA - New Symtoms

    Those sound like wegs symptoms. Definitely need to call the doc. Don't wait!
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    Re: Happy New Year

    and Happy New Year to everyone!
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    Re: Flare up Freak out

    I agree these flares take awhile to get under control - it's a stupid complicated disease. I just wanted to ask, have you been checked for a pulmonary embolism? It won't show on a x-ray.

    I hope...
  4. Re: Dr. Appt. - Vaccine did not work (no antibodies)

    I joined a clinical trial sponsored by the Leukemia & Lymphoma Society. I was eligible because I also have chronic lymphocytic leukemia.(also an auto immune disease) They did give us the results of...
  5. Thread: Leukemia

    by JeanMarie
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    Re: Leukemia

    Diagnosed with GPA 8/07. currently in drug free remission.
    Chronic Lymphocytic Leukemia 5/09 watch and weight. Going strong!!
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    Re: Songs about Wegener's?

    This is bad, please don't be offended. To the tune of jingle bells:
    You look good
    You look good
    You look good today
    Oh how nice you look so good
    Too bad you past away

    Hope everyone is well!
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    Re: Heart Catheterization

    Gilders, your stress test sounds awful. I'm so sorry.

    Pete, my cath was on March11 & sounds pretty much like yours. They started the iv 2 hrs before & kept it going until I left the hospital. My...
  8. Thread: Hey all!

    by JeanMarie
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    Re: Hey all!

    I just stopped by, for the first time in a long while too. Hope everyone is doing well :hug3:
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    I had my last pred on 7/10/16 after a very slow...

    I had my last pred on 7/10/16 after a very slow taper. My last RTX was on 7/1/14. No other drugs since the last pred. So far so good but of course, things can change in a heart beat.
  10. My Opinion...be careful---Goldberg is not an MD

    My Opinion...be careful---Goldberg is not an MD
  11. I'm with Pete on this. A second opinion is called...

    I'm with Pete on this. A second opinion is called for & I've never heard of "stage 4" either. Also, I took a quick search for cellcept & didn't find anything about mental confusion. Of course that...
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    Biosimilars - Rituxan

    Hi Everyone,
    I haven't posted here in a long while. I found this today on a lymphoma site & it is relevant to us: TruximaTM, the first biosimilar mAb in oncology, granted EU marketing authorisation...
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    Poll: Just saw this today. 2 Treatments, the last 2...

    Just saw this today.
    2 Treatments, the last 2 years ago.
    It works, in remission since the last treatment, currently no other drugs not even pred!

    Hope everyone who celebrates it had a Happy...
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    My kidney doc said back pain wouldn't be...

    My kidney doc said back pain wouldn't be wegs--said if in kidney area could be a stone--and of course there's no reason we couldn't get kidney stones, but at least it wouldn't be wegs :smile1: As far...
  15. Thread: Nyc

    by JeanMarie
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    Hi Susan, The reach email for the Tri State...

    Hi Susan, The reach email for the Tri State chapter, listed on the foundation's site was: [email protected]. I think they met in Dr. Lebovics office, but I heard they haven't had a meeting in a while....
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    Good Luck, I hope everything goes...

    Good Luck, I hope everything goes well!!!:rolleyes1:
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    Depends on what's going on. When I was in active...

    Depends on what's going on. When I was in active treatment (ex. Rituxan) every week or 2. Now, in remission, every 2 mo.
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    I have kidney involvement. When I was on cytoxin...

    I have kidney involvement. When I was on cytoxin & drinking a lot of water my sodium levels went down. My kidney doc immediately called & said substitute some of that water with gatoraid. Levels went...
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    I also take coumadin due to DVT & PE also from...

    I also take coumadin due to DVT & PE also from GPA. Been on it for 6 years. It's about as annoying as pred, but I'm still here. It's amazing what you can get used to!
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    This is late, I haven't been here for awhile,...

    This is late, I haven't been here for awhile, Happy Birthday to Phil & Blessings & good memories to you, Alisa.
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    I'm with Max --I'm going to take a hit on this,...

    I'm with Max --I'm going to take a hit on this, but I think some of us sorely need a basic ethics course.
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    Dear Alysia, I know you are still suffering your...

    Dear Alysia, I know you are still suffering your terrible loss but I am glad you have such sweet memories. Love & prayers for you.
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    Alysia, Well at least the smoldering wegs is...

    Alysia, Well at least the smoldering wegs is being treated - hopefully the rtx will be kicked to oblivion!!!

    Feel Better!
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    I've had it without any problems. I wasn't aware...

    I've had it without any problems. I wasn't aware we shouldn't have it--and truthfully I didn't check much.
  25. Thread: Jingle Bells

    by JeanMarie
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    I don't think that's it Birdie, but I like it!...

    I don't think that's it Birdie, but I like it! :rolleyes1:

    You made me smile.
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