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It’s been a 17 + years living with MG and I’m to the point of coping daily to the challenges. It started as ocular with the right eye being affected first. I ended up on pyridostigmine and steroids for quite some time which were increased dosages until their side effects became too much to handle. The neuro eye doctor who had diagnosed that was treating me referred me to a neurologist who after reviewing my test, symptoms and issues put me on azathioprine 50 mg twice a day and IVIg infused monthly. This worked for awhile but after about 10 years was not getting the job done. Unfortunately, he left the clinic I was using (260miles round trip) and I had to change doctors again. The new doctor suggested changing to Vyvgart on a infusion 4 weeks on then 4 weeks off. This helped out immensely but, due to scheduling issues I was not able to see him as planned for 10 months. I changed again to another Doctor who handled multiple cases of G MG and she suggested using the Pyridostigmine on the days towards the end of the 4 weeks off time which has reduced the symptoms until the next infusion. I did use an eye patch with the loss of depth perception and after going on the IVIg have not had any issues with double vision. Since using the Vyvgart for 9 months still no double vision but do exhibit ptosis in the right eye as well as neck drooping and swallowing issues. I an currently taking 30MG of the pyridostigmine when the symptoms return and have upped it to 60 mg since. This has helped a lot. The symptoms are such that I no longer feel apprehensive driving. The biggest issue is the fatigue in the hot weather. I found that if you keep the air conditioning in your car pretty cold it also helps as well as eye drops whenever the eyes feel dry. so far it has worked excellent for me.
During my struggles with the MG I have also been diagnosed with RA, another autoimmune disease. The azathioprine and Humira has been helpful keeping it under control with very few flairs of joint pain hitting me. When it does happen, I take a small dose of Prednisone for 3 days to combat the hand and knee pain. In the last 12 months I’ve only had to do that once.
My main takeaway is to listen to your body. If you are fatigued, take a short rest. Be certain you get 8 hours of rest every night. Listen to your doctors and do what they say and if you have a change in your condition, let them know. Don’t let yourself become discouraged, the creator of all of us always opens another door when one door closes. Have the courage to go thru the new door and overcome your fears. I have been driving for the last 14 years using the different methods for the double vision (eye patch, eye tape and eye drops). Listen to your body, if fatigued stop and have a cool drink. if you have trouble swallowing, take smaller bites and chew well, don’t panic take a sip of cold water. Life is too short to miss out on it by putting yourself in seclusion. There are more drugs in the pipeline, discuss with your doctor and if you feel your doctor is not listening to you, fire them. Good luck and God Bless you and yours.