I have had T-Cell LGL for 13 years, it comes and goes, which means I stop making blood about every two to three years, and am transfusion dependent, I am currently on Metheltrexate workes except immune system is susceptible to flu, Broncitus, and pneumonia, just came out of 7 days in hospital with double pneumonia, there are thousands of us with this disorder.
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i have it 50 yr old male, im being treated at Hershey and was asked by Dr. Thomas Loughren to visit him in Virginia ...........i was diagnosed in Aug. as i was preparing to give my brother a marrow transplant. my questions are about the future....... i was told i have probable had this for 20yr. i have been on pain meds since. its to the point that i can no longer feel comfortable functioning, driving and god forbid working , Im a contractor. i hope this makes sense, i have no one to talk about this...... Oh to make it better i had a t-wave issue in my heart during feb 2016, died 2 xs for a total of 7 min. my mind is Fu..c@#ked! any help?
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My wife contracted LGL Leukemia at age 75(76 Now) and is on methotrexate which drives her immune system to almost zero. She suffers from chronic back and limb pain as well as swollen lower limbs and feet. Doctor has not provided any medication for pain relief or swelling. She is so fatigued that she is only able to stand and walk for brief periods.FACE
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What is the name of the closed LGL group? I have LGL and am getting treatment at the Cleveland Clinic. I need to know if anyone has had success with Xeljanz.
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