Michael
Forum Replies Created
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Director of operations/business systems integrations/data management, health insurance industry. I had 12o employees, 7 direct reports. I climbed the ladder in management after my MG diagnosis. The MG didn’t stop me, but the side effects from the medications put a damper on things.
One of my rubs with the corporate world is all will say they will accommodate my situation, in reality only about 20% will.  The higher I got up the ladder, the more difficult things got. The travel was hard for me because I always had issues sleeping from all the Prednisone I was taking. I was pretty much useless with no sleep….and it became more difficult the older I got.
I’m retired now, but would have loved the work from home situation COVID created. Now everyone works from home…no questions asked.  After being diagnosed, I lasted 18 years in high stress environments. Honestly, I’m happy to be out of it.
I wound up bowing out early due to the side effects from long term prednisone use. Seems like it wreaked havoc on all my muscles and connective tissue. Steroid myopathy and chronic tendon pain. If it wasn’t for that, I’d still be in it.
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I had a thymectomy 26 years ago. It didn’t put me in remission, but it may have made the MG more manageable. That said, I think that’s a bazaar clinical trial. They would have to make an incision in your body to make you think you had a thymectomy…right? No way would I do that. I’m with you and absolutely 100% would want the thymectomy and there would be zero guilt about not participating in that study.
I understand the need for clinical trials, but honestly, give me the medicine! My MG definitely will not get better without treatment and will get 100% worse. Lucky dog if you’re the one that gets a placebo and you get better. Unfortunately, I don’t have the kind of luck.
I don’t feel that I could ever participate in a clinical trial because of the risk of getting a placebo or the therapy being tested doesn’t work. I don’t want to have to deal with a flare…I have a miserable time dealing with double vision.  Anytime I had flare, it would take almost a year for all my symptoms to be almost back to normal.
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Here’s the saving grace for us seronegative folks, Imuran, Cellcept, Retuximab, IVIG and many other treatments are not FDA approved for MG and most are covered for use with most insurance companies.
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Okay…I got it. Just like me. I’ve been living with MG for 26 years. I can only go ,5mg every 2 months. I’ve been on Prednisone the entire time and have so many side effects. Slow wins the race. I’ve been on IVIG for 2.5 years. Any therapy takes a very long time to respond with me, so don’t get discouraged. It’s taken me this long to get from 22.5mg per day down to 7mg per day. Be patient….don’t let a time table dictate your tapers….let the MG symptoms do the dictating.
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Hello Theresa, That’s fantastic news, glad the therapy seems to be working for you. Can you clarify “i have to remember that reduction will cause MG like symptoms.”? Are you saying you become symptomatic because of the taper, but it’s not the MG flaring? I’ve been in IG for a couple years. I’m down to 7mg a day, but am afraid to go further. Every time I taper, I have droopy eye symptoms, but a couple weeks later everything clears up.
Mike