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  1. #21
    Join Date
    Aug. 25, 2008

    Default Forgot to add

    Sorry I forgot to add that ATG Ida anti-thymocyte globulin which reduced t lymphocytes. Again this is a type of immune suppression commonly used in transplant or cases like aplastic anemia. However, like I had mentioned I did see it used in a scleroderma patient. Unfortunately, I do not know how he did after the drug (I'm on inpatients so don't see the follow up)

    Drugs like inflixiamb (remicade) are monoclonal antibodies (or mab's) and target different molecular markers on cells. So basically different mab's have different targets and can be humanized or chimeric. If it is fully humanized there is less risk for reaction. I use rituximab and campath often on the unit, but these are murine chimeric so there is a risk of reaction.

    If you have a problem with IL-6, do you have any problems with your B cells? Also do you get fevers often for no reason? Sorry, I'm just curious about all the implications of your IL-6 mutation.

  2. #22
    Join Date
    Jan. 17, 2008
    Dutchess County, New York


    Thinking of you this morning, Punkie!

    Isn't this board amazing?! I'm so glad Moogles has joined the discussion :-)

  3. #23
    Join Date
    Oct. 30, 2008


    Sending more jingles! Please post a follow-up report!
    Flip a coin. It's not what side lands that matters, but what side you were hoping for when the coin was still in the air.

    You call it boxed wine. I call it carboardeaux.

  4. #24
    Join Date
    Sep. 30, 2002
    Alamo, CA USA


    Punkie: I suffer from some (but thankfully not all) of your maladies. I have Ehler's Danloss, I have Hashimoto's thyroiditis; after I had breast cancer, I developed an immune system deficiency and have less than 1/4 normal IgM and hence catch every bug that goes around. I am allergic to all but basically one class of antibiotics that are available orally and can't tolerate most anesthesia or anything narcotic.

    They tried to treat the IgM deficiency with infusions of IgG but after two days of infusions (std. treatment 2 liters/day for 7 days every 4 weeks) of infusions I had a massive allergic reaction and ended up in the hospital. The only other cure is bone marrow transplant and I decided I'm not sick enough to attempt a life-threatening "cure".

    Finally I have gotten a handle on my health (a bit) with the help of my pulmonologist (I had a systemic case of coccydiomycosis in college which manifested as a tuberculin infection and my right lung has big scars in it - so all of my illnesses go to my lungs/sinuses). I use Ocean Nasal Spray 3+ times/day and spray it until I'm gagging and coughing and it is running down my throat and out my nose. Then I blow. I do this a couple of times/day and it had really kept down the infections and illnesses which without IgM, my immune system doesn't recognize until I am so sick I have to be hospitalized. If you haven't tried using salt water to cure things - try it! I also cured a resistent to antibiotics infection/cellulitis with 3x/day epsom salt hot water soaks. My infectious disease doc was amazed but I really DID NOT want to have a port for a computer to deliver IV meds round the clock.

    I was supposed to have a bone marrow biopsy a year ago (they thought I had some sort of leukemia) and I got so worked up over it I basically had a mini heart attack thing right in the waiting room and had to go to the hospital by ambulance. Turns out I had an electrical defect in my heart (previously undiagnosed) that turned out to be ventricular tachycardia (since ablated and maybe fixed?). Eventually my WBC levels returned to sorta normal and my RBC no longer shows signs of polycythemia, so no one has threatened me with the biopsy again.

    So try the Ocean nasal won't hurt and it helps reduce the incidence of catching nasty little bugs...oh yes, wash your hands like crazy and don't touch your face with your hands unless you've just washed them!!!!

    Good luck and let us know how your appointment turns out.
    Georgia Langsam
    Team Gauguin, LLC -
    Standing Gauguin du Cheval 9054, Prestige II TG, Gauguin's Impression, Gauguin's Brush and Weltfrieden TG

  5. #25
    Join Date
    Apr. 20, 2011


    huge ((HUGS)) to you! my husband has mantle cell lymphoma, and the first go round the oncologist was like dealing with a dead fish. :-( couldn't have a give and take discussion as he had his "script" he had to deliver, I swear he practiced in front of a mirror, and we couldn't interrupt him with a question as he would just go on as if we had never spoken. When hubs' cancer was showing signs of returning I told him and everyone who would listen we were not going back to that Dr. I was so frustrated with him the first time around that to go thru it again I'd probably lose it and stab him with his own scalpel,

    keep on being your own advocate, find any way you can to get them to listen to you, sending lots of good thoughts and prayers!

    ps, hubs has had two bone marrow biopsies, one they put him out, the other with a local and neither was as bad as he/we expected, hope it's the same for you!

  6. #26
    Join Date
    Oct. 30, 2008


    Punkie....check in with us please!!!!
    Flip a coin. It's not what side lands that matters, but what side you were hoping for when the coin was still in the air.

    You call it boxed wine. I call it carboardeaux.

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