[patrick tribbey]

We have discussed with our neurologist and we plan to hold at 30 mg per day until we can assess if and how much to increase the dose. Reading the forum it seems many people are at 60 mg as a final dose level. We hope we don’t need to go that high but it is what ever it takes. The neurologists at Avera here in Sioux Falls, SD are first rate and I can’t say how happy we are to have them. They were able to determine LEMS in about 6 weeks where I have read others have taken years to determine LEMS.  Right now we are at 5/10/10 and although we have experienced improvement we are far from anything close to normal. Question, how long does it normally take for Firdapse to accomplish what ever improvements it is going to do? We are still taking Mestinon, and Prednisone, and our doctor is planning to do a booster IVIG down the road. Understand my wife nearly died so the road back will be long.

[patrick tribbey]

My wife began Firdapse about two weeks ago. Her starting point was being unable to swallow, sit up, walk, or just about anything. She came off a ventilator about 4 weeks ago and had already had IVIG, Mestinon, and was on Prednisone when we applied for Firdapse. Since she has started Firdapse she has made a lot of progress. She can sit up, and help me when I have to pick her up to move her to the pot, bed, and chair. We are at 10,10,5 dose level. Our situation is we must stay with Firdapse as there is nothing else. We have not had any side effects we can blame on Firdapse as she has upset stomach, and such from being fed through a peg to her stomach. We are hoping she can pass a swallow test in the next couple of weeks so she can eat normally. By the way, thanks for this site and forum for LEMS as we don’t feel so alone.