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
been up all night–(thanks to my ivig headache–lol) researching this medication. It really does sound promising and pretty minimal side effects. The worst being seizures–so may want to consider this if seizure prone?? Other than that the side effects were the ones listed for most any medication. Of coarse as with any new medication–a lot of side effects aren’t noticed until years later when lots of people have been taking it.. but hey–the good with ther bad–im willing to try it if my dr finds out its ok with the type of potassium antibodies that are causing my cidp.
It is sustained released, does not have to be taken with food, taken twice per day and starts working quickly–with max serum levels taking only 3-4 days. If anyone has started it it would be great for some info : ) does anyone else on here have antibodies to potassium? Does anyone know if people with MS have antibodies to potassium?? Lori