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Robert Standifer replied to the topic Myasthenia Gravis and Ravulizumab (Ultomiris) Side Effects in the forum Healthcare and Myasthenia Gravis 1 month, 2 weeks ago
I had my 6th treatment 2 weeks ago. I am just now getting the full effects of it. The side effects for me have been minimal. The headache the same day as the treatment, but Tylenol helps. Somewhat of a backache, but not as bd as with Soliris. I have been dealing with MG for 30 years and it goes up and down. I just don’t get stressed out if…[Read more]
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Robert Standifer replied to the topic Plumber risk in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 2 months, 1 week ago
I failed to mention, that I also have had MG for 30 years. Various different stage over the years. That is why I finally retired. I was found out in 1992 that I had MG and had to retire in 1993. Started my own plumbing business in 1999 and then had to retire again in 2014.
I have had IVIGG, Plasma Pheresis, steroids, Soliris and am now on…[Read more] -
Robert Standifer replied to the topic Plumber risk in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 2 months, 1 week ago
Hello. I am a retired plumber of 45 years. I instructed all of my guy’s to do whatever is necessary to get the job done. Booties, mask or whatever made the customer feel safe, within reason of course. I never had any of them complain. So, by all means yes, ask them to make you feel safe. A good person will comply with no issue’s. Good luck. Sorry…[Read more]
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Robert Standifer replied to the topic Homeopathy and Myasthenia Gravis in the forum Mental Health, Self-Care, and Support 3 months, 3 weeks ago
I have had MG for just over 30 years. I had a malignant Thymoma. Thymectomy and radiation therapy and lost the use of my left lung. I take 3- Mestinon 180 mg Timespan, 3- 60 mg, 2- 500 mg cellcept, 700 mg DMAE supplement and Ultomiris treatment. I had my third loading dose January 30. I have been on prednisone and went from 175 to 265 pounds. I…[Read more]
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Robert Standifer replied to the topic Is MG hereditary? in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 5 months, 3 weeks ago
Hello. I was part of a study group in Houston Texas about 12 years ago, at Methodist Hospital. It lasted about two years and they found that MG can be hereditary. I’m not sure about your MG. I have generalized MG. I’ve had it since 1993. It goes up and down. Right now I’m on the Ultomiris treatment and it is working pretty good. Good luck. I hope…[Read more]
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Robert Standifer became a registered member 11 months ago
Hello, Robert! We are thrilled to have you as part of our inclusive and judgment-free community of MG patients, caregivers, families, and medical professionals! Within the Myasthenia Gravis News Forums, we implement a safe space to share and discuss experiences, information, and news and offer guidance and support.
Please familiarize yourself…[Read more]