AnonymousNovember 22, 2010 at 1:42 pm
I’m interested in hearing from any CIDP patient (especially anyone with Lewis Sumner) who has been prescribed and taken Arava, Ampyra, or any other new “MS” drug.
Which medication do you take? For what symptom(s)/condition(s) was the medication prescribed? How much do you take and how often? Are there side effects and, if so, what are they? Did the medication help? In what way(s)? Do you reccomend trying it?
November 23, 2010 at 9:21 pm
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
AnonymousNovember 24, 2010 at 8:17 am
I have CIDP and take two “MS” drugs … tizanidine to help control my muscle spasms and ampyra to help me walk. I wouldn’t give up either one! The ampyra really helps with my ability to walk – not only better, but also longer. I started feeling the improvement from the ampyra after about a week. You do have to take it 12 hours apart as too much in your system can create unwanted side effects. I have my phone alarm go off at 6am and 6pm because if I miss a dose, I notice a decline. Hope this helps!
November 24, 2010 at 10:47 pm
that is interesting linda–did you have any problem getting the ampyra since you do not have ms diagnosis? what was your walking ability before the ampyra as compared to after? do you have both sensory and weakness with your cidp and did the ampyra help with that? Just curious does it help regulate the gait disturbance or help with strength to make walking easier? I know thats a lot of ?s–hope you dont mind. I did a lot of reading on it when it firtst came out and was hopng to try it–but was told it would not be good for me due to my type of cidp. Lori
AnonymousNovember 29, 2010 at 6:32 pm
I had no problem getting the ampyra … my doctor had it preapproved and the pharmacy called to set up the delivery. My neuro also was able to get me Namenda, which was developed to respond to neuropathy pain but has only been approved for Alzheimer’s. I’m sure my insurance sees the wide range of meds I take and approves them all because my doctor takes the time to explain why I should take certain prescriptions. But I guess I will soon find out how understanding my insurance company is as I have my evaluation for SCT in Jan!!!
I have pain in my feet all the time – the longer I walk on them, the higher the pain. I still have reasonable strength, it is the pain that limits me. I believe the ampyra is somehow soothing my nerves, allowing them to function better. I understand it is only temporary as this is not a cure and the CIDP is still taking over, but I can walk a little farther than before (the pain would overtake me, making it difficult to walk at all). Right now I’m home in bed rather than at work due to high pain … sigh … it is a long walk from my car to my office. Before the ampyra, I used crutches to take some of the pressure off my feet. Now I can usually make the walk without aid.
Hope this helps,
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