Erin–im not sure if its just the way my rx is written or if its to do with the type of cidp but i have gotten nothing but gamunex since starting ivig. I never even realized that they substituted until last week when I asked the ivig nurse. she told me that my order specified only gamunex and that was why it was never substituted. if you do continue to have problems maybe you could ask the dr about it. I hear you–my body loves the gamunex too–I love the energy i have getting it–makes me feel more like my old pre-cidp self!!: ) Lori

I too was interested in this medication—but was not a candidate due to the type of antibodies that i have. I went into some of the ms forums to read what people had posted about it (much more real info than reading the drug companys reviews) it was pretty mixed, some said it worked but you had to take it exactly every 12 hours for the effect,some thought it made them worse and some said it did nothing. the good thing was it seemed for the people that it did work they wrote that it took effect pretty quick. From what ive read the drug somehow works on the potassium channel–covering the nerves so the signal passes through more effectivley therefore making it easier to walk….now that is an extremely simplified laymans terms to a looong medical explanation–lol. For a full description google fampridine or ampyra. Keep us posted–it would be great to find out that this drug is being used and is successful for cidp Lori

No to all questions 1-8—–I think looking for similarities with this disease is a great idea–but will probably be very difficult. : ( Lori

that’s a great thought : ) i hadn’t thought of that–but with auto immune related diseases on the rise—can you imagine the success of the pharmaceutical company that manufactures a successful drug for it!!!! they would be very rich and we would be very happy—–that’s okay i’ll take happy over rich any day–lol Lori

Sorry to hear of all that you are going through dieno 🙁 I hope they find something that works for you soon…….and dont feel bad about getting mad or “feeling screwed” i think you have every right to feel that way with all thats going on. Lori

Linda–was curious as to what your mobility was before starting ampyra and how much did it improve after, I too asked about trying it–my neurologist called the ampyra drug co, after talking with them she said I shouldn’t try it because of the type of cidp that i have. Mine is caused from a paraneoplastic disorder of potassium antibodies and apparantly ampyra works by doing something to the potassium channel?? It seemed to me that would be more reason for it TO work–but im not a dr and do not know as much about the ion channels as she does. Glad that it is working for you:) Lori

wish i could give you more info on the ivig but i have only had gamunex—so nothing to compare it to. I do find that if i drink tons of water and cut the benedryl dose to 25 mg i can avoid the headache MOST of the time, not always a guarantee–but it helps. I havent had a lot of ivig –but am finding that i respond a little differently to each one. There was one infusion when i felt nothing–and wondered if they just didnt infuse me with saline –lol. my last one i felt great after—-its so hard to tell…the cidp has good days and bad days and then we get good ivigs and not so good–no wonder its so hard to figure out what going on??? but stick with it—from what i read in here people do seem to find things or combinations of things that work for them and its so different for everone. hope you find what works for you soon–until then stay strong, take one day at a time, best of luck…Lori