Jane
Forum Replies Created
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Hi my name is Jane. I was diagnosed with MG in 2014. Whereas my brothers daughter who is 22 years younger than I am was diagnosed in 2008 with MG. My niece has been on IVIG since her diagnosis. I have not.
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Currently living in Illinois moved from Greenville SC 2020 where Dr. Sarmiento had me on Hizentra for low IgG & IgM levels. Yes I have MG. In 2017 I was in ICU Greenville Hospital a doctor did some research and found a clinical trial happening in Canada as hizentra related to MG patients. Never did find out results of clinical trial.
Now in answer to your question, I was on Hizentra 4 years subcutaneous and it went well. I was never ill – I felt the best in years on Hizentra. I had no side effects from it and I am currently waiting for Medicare to make up their mind as it relates to my going back on Hizentra. Not being on it for 3 years, I now have a bacterial infection, walking pneumonia and chronic bronchitis. Unfortunately for me I will be on it forever. Good luck.
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I’m taking prednisone for MG down to 2.5mg daily. However, I have an appointment with a neuro-ophthmologist due my vision — when reading from left to right the letters of words get smaller and smaller (lest ey3 only. Was told last eye test, 2 years ago, no macular degeneration but…. Jane
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My niece was diagnosed with mg 2008. I was diagnosed in 2014. She gets infusions every two weeks. I do no infusions. I as well as my niece were both told not hereditary. Both is us have autoimmune deficiency’s.
Jane
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US I’m on prednisone for over 14 years Down to 2.5mg But also on Cellcept 2500mg daily which I understand will replace the prednisone when I am finally off it. My body tolerates Cellcept so I am lucky. I agree with others – be careful what muscular physician bring referred. My mg neurologist handles all. Good Luck
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I was diagnosed in .2014 with MG I am insomniac and have been using Cannabis for sleep and helps with anxiety for many years. To date no repercussions. Sorry you have.
jane -
My niece 20 years younger than I, acquired MG when she was 39. I was diagnosed at 64. She has infusions every other week I have no infusions, takes 180 mg mestinon daily plus other meds I am not aware . I was taken off Mesitnon last month. I’m down to 2.5 mg prednisone daily, Microphenolate 500 mg daily, and CellCept 300 mg daily. We both have multiple Auto-immune diseases.
jane