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  1. Replies
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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...
  3. 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.
  5. My Opinion...be careful---Goldberg is not an MD

    My Opinion...be careful---Goldberg is not an MD
  6. 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...
  9. 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...
  10. 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.
  20. 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.
  21. Thread: Very Sick

    by JeanMarie
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    Teri says it all!!!!

    Teri says it all!!!!
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    No, but doesn't that sound like an allergic...

    No, but doesn't that sound like an allergic reaction? Tell the doc, just in case. If you are allergic, the reaction could get worse if you have another scan.

    Be Well!
  23. Thread: Very Sick

    by JeanMarie
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    Hi Spirit, I agree with Alysia, but want to ask:...

    Hi Spirit, I agree with Alysia, but want to ask: Are you seeing a nephrologist? Stage 3 kidney disease requires a nephrologist, don't wait for things to get worse. I hope you find a solution & are...
  24. Thread: Jingle Bells

    by JeanMarie
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    428

    Jingle Bells

    Hi All,

    Hi All,
    I heard this tune some time ago & I thought it was cute. It's
    for those of us who don't look sick & are constantly told that by
    friends and family. Unfortunately I can't...
  25. Hi Maurica, I'm sorry your Mom is having so many...

    Hi Maurica, I'm sorry your Mom is having so many problems. Some things really stand out to me. Number one is sleeping 16 hrs at a clip. A lot of us on pred have trouble sleeping. Is she still on...
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