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  1. Hi All, FYI I am a patient at Boston...

    Hi All,

    FYI

    I am a patient at Boston Univ. Med. Center and am a Patient of Dr P Monach and Dr P Grayson,the docs that are conducting the survey ,so I mentioned I could not get the link for...
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    Hi Norcalian, I just noticed your thread......

    Hi Norcalian,

    I just noticed your thread...
    I've had SOB and High BP since being diagnosed in 2007.
    I wentto a Pulmonary Spec,did all the breathing tests,all normal
    Then this year after...
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    SOB

    Hi Rose,
    Haven't checked in here in a few days...

    The Atenolol slows my heart rate,lowers my BP ,and makes the SOB go away.
    It makes me feel much stronger on a good day.

    Hope this helps,...
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    Hi J.Mike, I haven't been on this chat for a...

    Hi J.Mike,

    I haven't been on this chat for a long while,but I found your story interesting.
    I'll try to give my Weg story(Readera Digest )version.
    Dx'd in 2007,Prenisone since then,can't get...
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    Jeff, Dont worry about figuring it out.Your long...

    Jeff,
    Dont worry about figuring it out.Your long -term disability company and SSI will figure it out for you.

    Congrats.

    Aunnie
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    Hi All I start my Rituximab infusions Sept....

    Hi All
    I start my Rituximab infusions Sept. 10th. Im receiving 2 infusions ,2 weeks apart. With the infusions I will get Decadron,Benadryl and Tylenol.Im told I should have no major problems,maybe...
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    Hey Phil, So glad you are home.. Try to rest...

    Hey Phil,

    So glad you are home..
    Try to rest up and feel better..2 months is a long time but then again you are home and away from hospital germs.
    Keep us posted when you are up to it.
    ...
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    Yahoo the Wegs dogs are singing"who let the dogs...

    Yahoo the Wegs dogs are singing"who let the dogs out" can you hear them?? Everybody sing!!!!!!!
    LOL

    Aunnie
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    Funny Girl Sangye!!!!! You made me laugh,...

    Funny Girl Sangye!!!!!

    You made me laugh, which I needed ! Thanks.

    I'll keep you all posted and thanks for the encouragement!

    Aunnie
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    Yes, Sangye $2k out of pocket each infusion! It...

    Yes, Sangye $2k out of pocket each infusion!
    It just amazes me that they think money just grows on trees.
    I hope it does work,but I am still nervous about it because what cames after Rituximab.......
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    Hi All, I went off the Orencia...

    Hi All,

    I went off the Orencia infusions(study) about 2 weeks ago. I was on them for 7 months.

    So now I start Rituximab Sept. 10th for 2 infusions.
    I will be going off cellcept and lowering...
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    Andrew and Marta, I love the tshirt idea,a...

    Andrew and Marta,

    I love the tshirt idea,a color would be nice,front and back is good,pred ideas are great!!!!

    I surely would buy some,big sizes is good.

    Not very creative especially...
  13. I am in both studies,the VCRC and the...

    I am in both studies,the VCRC and the Orencia(abacephtet sp also). The VCRC is only blood work every 3 months and Orencia is infusions monthly. I go to Boston Univ. Med Center. I live in Rhode...
  14. Thread: In CT

    by Aunnie
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    Thanks Jan. They are both very...

    Thanks Jan.

    They are both very knowledgable.Dr Monach does work more in research,is very good with patients. He also lets me e-mail him if any problems or new symptoms occur.
    I do also see Dr...
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    Thanks JanW for the info. Im so glad you were...

    Thanks JanW for the info.
    Im so glad you were able to attend.
    Keep the info coming.

    Aunnie
  16. Thread: In CT

    by Aunnie
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    Hi JanW How were DRS Merkel And Monach? They...

    Hi JanW

    How were DRS Merkel And Monach?
    They are my docs from Boston.

    Thanks
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    Victoria, You are being so brave and so is...

    Victoria,

    You are being so brave and so is your husband.Its all so scary. It seems like you are in goods hands and have lots of support,which is always very helpful.

    my prayers tonite wil be...
  18. Thread: Sangye's Status

    by Aunnie
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    Sangye, I don't any of you very well but you...

    Sangye,
    I don't any of you very well but you seem to be very popular,cared about and knowledgable.
    Please know you are also in my thoughts,I don't do very well on pred either.
    How sweet of...
  19. Thread: Sangye's Status

    by Aunnie
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    Sangye, Welcome home,so glad you are doing...

    Sangye,

    Welcome home,so glad you are doing much better.The details do become overwhelming at times ,so take care of you.

    Good luck At JHU

    When you are up to it keep us aprised of your...
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    Hi Josh's mom, I also see Drs Merkel and Dr...

    Hi Josh's mom,

    I also see Drs Merkel and Dr Paul Monach at BUMC.

    I've had ear problems with pain deep inside my ears and skin lesions on the outer cartilage ,usually in the folds of the outer...
  21. Hi Jeff I've been a Weggie since 2007.I didnt...

    Hi Jeff
    I've been a Weggie since 2007.I didnt work than whole and went back summer of 2008.At my work I had Long Term Disability(thank Goodness),so I started getting LTD July of 07.
    when I went...
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    HI Phil, I also haVE BEEN OFF FOR AWILE,BUT...

    HI Phil,

    I also haVE BEEN OFF FOR AWILE,BUT HAVE BEEN THINKING ABOUT YOU.
    SO SORRY ABOUT THE TB,WE ARE SO SUSCEPTIBLE TO MANY THINGS.

    Get well soon,and keep us posted.

    Aunnie
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    Keep us posted,IAN, on how you are doing! ...

    Keep us posted,IAN, on how you are doing!

    Best wishes

    Aunnie
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    Hi Everyone, My docs from Boston Univ.Med...

    Hi Everyone,

    My docs from Boston Univ.Med Center are going and speaking.I am seeing them on Friday ,so I will ask if they can bring back any info for us!!!!!

    Any particular questions??
    ...
  25. Thread: Dr. Appt Today

    by Aunnie
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    I love to play marbles.red is my favorite !!!!!!...

    I love to play marbles.red is my favorite !!!!!!

    xoxo
    Aunnie
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