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MG taking Azathioprine

I was diagnosed with MG 7 years ago. Went thru the pyridostigmine - prednisone treatment for about 2 years. Celcept for about 1 year.
Next 4 years took pyridostigmine only on flare ups which were rare. (At this time only Ocular MG left eye) As of May of 2024 Ocular MG is a daily occurrence and I know have Bulbar MG ( hoarse voice some slurred speech). I take my pyridostigmine 2 or 3 times a day when it flares up. My new doctor (neurologist)
Just started me taking Azathioprine 100mg and Prednisone 20 mg. It will take at least 6 months to begin working.
After that off Prednisone stay on Azathioprine supposedly for life.
My question is has anyone been taking Azathioprine for longer period of time and how is it working.
Would appreciate any and all input.
Thank you

  1. Go on the internet … I do much of my research reading different experiences and recommendations from the travelers themselves..Most of the reputable Insurance Companies do offer travel insurance….but it can be expensive depending on your needs.
    If it’s a short vacation it should not be that expensive…. But for piece of mind it’s well worth it.
    As far as my situation…..I’ve read it’s not recommended traveling for long periods of time with an autoimmune disease. Life is short and I believe in living my life as normal as possible.
    My MG is not physically disabling where I can’t travel. If the Azathioprine does what it’s supposed to do I’m fine with that.
    But I will be careful of coarse.
    My travel is more of a permanent nature.
    I will be traveling from US to the Philippines. I built my retirement home in the Philippines.
    I spend 6 months there and 6 months here.. give or take a few months.
    But I will be pro active with my MG.
    I intend to seek out and consult with doctors and hospitals in my area to find someone with knowledge on Autoimmune diseases…
    My motto … Think Ahead Be Prepared.
    Hope this helped .

    1. How exciting! Thanks for sharing. I fully agree to take advantage of any opportunity to travel when MG allows. Sending good vibes your way for safe travels!
      - Jodi, Team Member

  2. Oops

    1. Thank you for your response.. yes I have been tested and have the AChR blocking.
      I agree with you 100% on your comments on being pro-active on one’s own treatments . It took me a few years to realize this was a serious disease and I began to inform myself as much as possible thru the internet. Reading people’s stories and doctors different analysis of patients at different stages of the disease..
      I am 73 years young and consider myself healthy for my age… except for my MG which I was diagnosed at 65.
      At this time I feel very relieved and thankful to have STUMBLED onto this web site where I can ask my question's and get answers from experiences… It helps me make more informed decisions and ask the right questions for my doctor to answer..
      will talk soon… Jodi Elder🙏


      1. I have already started my list… every day I’m thinking of what questions I need my doctor to answer..And believe me I will cover all aspects… especially because I will be out of the country for probably most of the year.
        I will have her prescribe my medication so I can take at least a full year of my medication with me..(azathioprine)much cheaper with my Medicare..
        Thank you for the heads up .

      2. I have yet to travel out of the country in general, especially with MG, but I have plans to start doing more out-of-country travel next year. Have you had travel insurance in the past or looked into travel insurance for your upcoming travels to other countries? I have been hesitant because picking a reliable company that isn't going to screw me over in the event something costly did occur out of my resident country. Would love to hear any tips or accommodations you plan to make
        - Jodi, Team Member

    2. Many doctors encourage patients to stay on medications for life to avoid any flares or crises. But keep in mind you can make the ultimate call about your treatment, and some choose, once symptoms are controlled, to come off medication. Some prefer to take the chance of a flare or crisis down the road and refiguring out treatment vs prolonged treatment use. Of course, this risk involves the chance of a critical crisis and future hassle to control symptoms again. This is all a personal preference. I encourage you to glance at the tips in the following article: https://myasthenia-gravis.com/living/educating-yourself.
      ---
      Do you know if you test positive for one of the three common MG antibodies: Acetylcholine receptor (AChR), Muscle-specific tyrosine kinase (MuSK), or Low-density lipoprotein receptor-related protein 4 (LRP4)? Or if they are negative in blood tests and you are seronegative MG? https://myasthenia-gravis.com/clinical/understanding-antibodies.
      ---
      Here are some Azathioprine/ Imuran articles and discussions: https://myasthenia-gravis.com/living/azathioprine, https://myasthenia-gravis.com/stories/life-after-remission, https://myasthenia-gravis.com/forums/your-azathioprine-imuran-side-effect-experience, https://myasthenia-gravis.com/stories/new-life.
      - Jodi, Team Member

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