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  • November 23, 2010 at 9:45 pm

    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

    November 23, 2010 at 9:25 pm

    Jeff was the naltrexone prescribed for you for pain or to actually help with strength and numbness from the cidp? Lori

    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

    November 23, 2010 at 9:07 pm

    I started having ivig just every 12 weeks for my first year(standard dose 2kg per lb) I was able to do it in 2 days verses the standard 5 days–was told this basically depends on your age, health, kidney functions. I think a lot of the treatment plans really depend on whether your Dr. is conservative or aggressive in the treatment. I’ve done a lot of internet reading–i think insurance is a biggie in the ivig industry, how bad your cidp is—if its not as progressed seems it isnt treated as aggressively– plus it appears different antibodies respond differently to it. I read on one site that in some cases it is good to let the antibodies “settle” before each round of ivig?? So really its a hard call for us AND the Dr.s to know whats going to work. Each case is so unique. I was recently switched from every 12 to every 6 weeks, just had my first treatment that was 6 not 12 weeks apart and noticed a BIG difference in strength and energy. by the way— im treated in Ma too—at Lahey—excellent dr there. Dr srinivasan–neuromuscular dr. Hope all goes well for you, its hard to give advice with this type of disease as it is so different for everyone–so I’ll just share my experiences and read others experiences to learn–hope this helps : ) Lori

    November 21, 2010 at 2:13 pm

    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

    November 21, 2010 at 10:26 am

    That was an excellent site homeagain—thank you for the info. I think you had given it once previously and i wasnt able to get to it but finally did. I will definitely explore it again when i have more time. It had lots of info on paraneoplastic neuropathy which is what i’ve been dxed with. thank you again : ) Lori

    November 18, 2010 at 8:31 pm

    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

    November 16, 2010 at 8:41 pm

    my symptoms were very slow starting, started with muscle twitching and cramping which i just assumed was overdoing it with sports/exercise. when mentioning it to my pcp at my annual pe he suggested i eat more bananas.hydrate more?? then came fatigue, cold feet, tingling, he suggested reynounds–i looked it up realized he was wrong, got him to get me in to see a neurologist, she did a emg/ncv and determined there was something going on with my nerves—then scheduled me for an appointment to return IN A YEAR!!! To say the least i was not impressed at all—fortunately my insurance is ppo so i dont need referrals. I contacted the Lahey clinic–a teaching hosp in mass, got in quite quickly, got a real diagnosis between there and sending bloodwork out to mayo. Started ivig 2gm per lb evry 12 weeks for 1 year. now at 2gm per lb every 6 weeks—-hoping that will do the trick!!! Lori

    November 16, 2010 at 8:20 pm

    yeah i was wondering why it isnt being tried as well. I’m not a Dr……but it seems if there is a drug available to alter the immune system by boosting it verses knocking it down that it would be safer. I read that it is being used for ms, certain cancers , hiv/aids all which are immune related—guess i’ll have to check into it some more, gather all my resources before my next appt with neuro in February. If i find anything interesting i’ll keep you posted : )

    November 11, 2010 at 7:31 pm

    army 84-86 cidp 2 years

    November 6, 2010 at 11:08 pm

    Sorry to hear of all that you are going through dieno ๐Ÿ™ 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

    November 6, 2010 at 10:56 pm

    Hi Linda–yes that was helpful. I do not have any pain–just numbness in my feet. I can walk without any aids–but not in a normal gait due to weakness in feet, ankles and calves. I do think the ivig is working –just very SLOOOOWlY:(
    cannot run, ski etc and horrible balance, I was just curious as to exactly what the ampyra does–does it help with the gait–strength?? Exactly what it made easier in walking?? IF it works by “calming the nerves” then maybe it makes the signal from the brain to the feet work better?? ive researched the sites on it– but they really dont explain the mechanics of the drug–or at least not in laymans terms. maybe once it is around and used more we will get more info on it. If you stop taking it will you go back to how you were prior? from what ive read it does not have any “healing” qualities–just sort of treats symptoms. Thanks for sharing your experience with it–very interesting : ) Lori

    November 4, 2010 at 1:40 pm

    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

    October 23, 2010 at 1:59 pm

    the pe procedure doesn’t sound as bad as i envisioned it—winter is coming guess i could get lots of turtlenecks to wear to work for a little while for the port–even though i hate turtlenecks–lol. I think i will definitely give it a try if the ivig doesnt improve my strength in the next few infusions. I appreciate you sharing your experience with it–most helpful. It does appear the pe works for some better than ivig. take care–its nice to hear the success stories of people finding what works for them ๐Ÿ™‚ Lori

    October 23, 2010 at 1:48 pm

    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