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Old 01-08-2018, 10:51 PM  
New Member
Join Date: Jan 2018
Location: Tulsa
Posts: 3

Originally Posted by AnnieB3 View Post
Hey, Jim. How are you (besides the obvious)?

I'm sorry you have not found the right treatment for your MG. That's pretty scary. Are you working? Have they looked into other possible exacerbating factors such as diabetes, thyroid issues, etc.? I hope so.

Have you had any adverse reactions or symptoms on the drug? Write them down, if you do. You can be the first guinea pig!

I really hope this helps you. Have they looked at your immune system, such as IgGs, etc.?

This disease can be really tough. We either have to go on lots of meds to live somewhat normally or be on Mestinon alone and not be able to do squat.

You take care of yourself!

The drug is so new I have found no one else on it. Part of the reason also may be that it is for those who did not respond to traditional treatment. First new drug for MG since the 50's. Says a lot about how rare the disease is. I experienced hives and itching with the first IV of Soliris. Benadryl took care of that and until my last IV I was getting Benadryl before the IV. My last IV I tried without the Benadryl and had no adverse reaction from the drug. Got my first bill for the first IV of Soliris...$64,000.00. Not a misprint, it is close to a million dollars a year for my treatment. I had a pretty rough beginning with MG. I was not able to eat at all and barely swallowed my saliva for the first 29 days, then went an additional 41 days with minimal eating and that was just yogurt. Lost 50 pounds and then had a feeding tube put in. I wasn't able to swallow,clear my throat, blow my nose, etc. I had a suction machine to help me clear my secretions. The IVIG was not helping so I was put on 20mg prednisone per day and waited til Soliris was approved and started it right away. I'm much improved, but still a long way to go to get back to "normal" if it ever happens. I can eat but still restricted by what I am able to chew. Swallowing is consistwntly good now. I am not having to use the suction machine right now either. Hoping the rest will catch up soon. I am not able to work. Any real exertion and I have difficulty breathing. Something new to me now is a weakness in my legs and more recently in my arms. It doesn't seem to meet the MG standards of stopping working after repetition, but a general weakness. My Neuro says it isn't MG...... Ok, still is an issue that I have to deal with. I still have a general weakness and tire quickly. I have also started weaning off prednisone and hoping I don't have to start it back up.
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"Thanks for this!" says:
AnnieB3 (04-03-2018)