Sue

I have had a port since 2018 for chemotherapy for thymic cancer. They use it for continued infusions and contrast for scans etc. I have no issues with it.

I have GMG, diagnosed 10/2018;  I take 100/mg day Imuran, 240/mg day Mestonin and 5/mg day prednisone.  I also yet yearly Rituxin infusions. I have muscle weakness and pain in joints.  I also notice slight hair loss but it always grows back in.

I was referred to a pulmonologist. I had breathing tests, I ended up with COPD from the thymoma tumor. I use inhalers regularly and for over a year I used a nebulizer 4x day. My lungs have improved greatly. I know only get short of breath with exertion.

I also had thymoma. Myasthenia started  a year after thymoma removed. I ended up in ICU on ventilator. I started  having more sleep issues so had cpap  testing and now use it. I do think MG causes sleep issues.

I live in rural area and drive 100 miles to see Dr. There are not many that specialize in MG so go with what they gave me.

I received the evusheld on 3/30/22. So far no side effects. It was ordered by my oncologist that I see regularly.

The eye patch was the only thing that worked for me for driving, watching tv, reading and working. I got an eye patch from the eye Dr that hangs on your eyeglasses. I would switch from left to right throughout the day so as not to put all the stress on the same eye. Once I got meds right I don’t experience it any longer.

I also have sleep issues. I had 2 sleep studies. The second study I was hooked to the machine and they test different levels to see what works best. It has been going pretty good although I do still have sleep issues.  I think it’s the myasthenia. I am down to 5 mg Prednisone. I also take imuran and meeting.

I have not had issues with alcohol other than flushed face. I am taking imuran, predinsone and pyridostigmine.