Lori222
Your Replies
-
October 21, 2010 at 8:04 pm
yes–thanks, that makes sense–on the prednisone i had more numbness, walking was more tiring than usual and i was not doing as much physically as i was prior. since weaning off and having the ivig the numbness has decreased,more energy, and a lot of twitching and tingling in the nerves. I also recently started having accupuncture and get a lot of tingling after this as well.—- then on the other hand i sometimes get the tingling after exercising???So i guess if the tingling is going along with feeling good then its a good thing–but if its combined with fatigue etc then probably not so good??? Lori
October 20, 2010 at 9:27 pmthank you–glad to hear these tingling sensations are normal : ) i prefer the feeling of tingling and even pain over the numbness. the prednisone increased the numbness and weakness–so these feeling from the ivig are much better. nice to know –the info in your post about the numbness was interesting–i didnt realize that was a good way of measuring things with this strange unpredictable disease, Lori
October 20, 2010 at 9:18 pmi havent done much research on sct—i figured it was last resort after everything else had been tried and failed. So is that a major thing to go through? is is definite to rid one of cidp symptoms? guess i’ll need to do a little research on it. thanks for sharing your experiences : ) i am feeling better since my ivig—but am waiting patiently for it to help with strength in my feet.
LoriOctober 19, 2010 at 8:53 pmthanks for the info–definitely helping me make up my mind. I’m still going with the plan of ivig every 6 weeks until february (my next Dr visit) that is when i need to make the decision regarding pe. IVIG is pretty simple for me,good veins–no side effects—so hopefully the pe wont be too bad if its needed..Lori
October 15, 2010 at 10:18 pmyes to the paraneoplastic disorder—vgkc antibodies. wasnt sure if anyone would know what vgkc was– so simplified it—lol–you must be a google addict like myself. immune related which is why the ivig. The ivig is easier for me because i can do the 5 day coarse in 2 days. I’m not sure why its not going to be more than every 6 weeks–i asked, but my dr said she felt that 6 would be best–i just started this, prior to this i’ve been doing it every 12 weeks–i have had 5 treatments total at the loading dose of 2 kg per lb. Im not at all against the pe and would definitely try it if i could be a little more sure it would work faster or better than ivig. I havent found a lot of info on the web specific to what i have– the cidp in my feet, ankles and calves are the only symptoms i have experienced, the websites mainly focus on it being a prelude to cancer which we cannot find anywhere, i have no damage to nerves in brain or spinal–just periphel–not morvans, not isaacs?? guess that’s the joy of this stuff no two people experience it the same. How was having the port in the neck–hard to shower, is it visible in everyday attire–like when going to work? my dr said it would be about 9-10 days of hospitalization for the pe. her plan would be for me to stay there to do it. 🙁 long time away from kids , work etc???
October 15, 2010 at 3:11 pmwow Roland that is a lot of risks!!! I hope it works for you : )
how quickly did you come off your prednisone? im thinking of cutting 5 mg every 3 days–so far havent really felt anything coming off it–if anything–better. my dr was pretty vague just said go slowly, call her etc etc… So how much nausea with the chemo–that would be the worst for me—besides the hair loss– being a guy, that part probably isnt too bad for you. Been reading a lot on the new drug–fampridine/ampyra –thinking about trying it if my dr agrees along with the 6 week ivig schedule.–i think the ivig every 6 weeks will make a big difference–this is a 5 day regimen(done in 2 days) keeping my fingers crossed—would cross my toes too–but i can’t— lol. Hang in there–if the chemo works then it will have been worth it all. Do you know what is causing your cidp–like what types of antibodies you have, or what triggered it?
LoriOctober 15, 2010 at 2:58 pmbeen 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?? LoriOctober 15, 2010 at 2:42 pmyou just said everything my dr said yesterday–so yes it helped : ) she basically said all of the hassle of the pe verses ivig—and she isnt finding the pe to work any better. appreciate the response–thanks
October 14, 2010 at 10:50 pmMy neoro is looking into me trying this for my cidp–she needs to speak with the drug company to see how it will react to my type of cidp. My immune sysyem makes ant-bodies to potassium and this medication blocks potassium channels———-so she needs to do a little research to make sure it wont make things worse, will keep you posted : ) Lori
October 14, 2010 at 8:00 pm[QUOTE=laurel]Lori222, I see in the new GBS/CIDP newsletter that Dr. Gareth Parry talks about giving oral methylprednisolone 500 mg. weekly and he says “have found that almost all patients improved and more than 50% are in complete remission”. I wonder if you tried that sort of regimen?
Laurel[/QUOTE]Nope the only things i’ve tried are the Ivig and the 50 mg of regular pill type prednisone. The prednisone didnt help me–acyually made my feet and ankles feel weaker–i wondered about pred myopathy?? im tapering off now–down to 20. next plan is to increase ivig to every 6 weeks–was every 12. Is the methlpred good for people who were not successful with ther regular pred? Lori
October 11, 2010 at 8:01 pmyes -i was thinking i would ask my dr when i go on thur what she thought about once a month for the ivig instead of every 6 weeks…did you have any respnse at all from the ivig? I was wondering if they only go to the next level of treatment when there is no response at all or if they step it up when things just seem the same as mine as been—thankfully no worse. I’ll go back and read your older posts now–i enjoy reading through them to see what’s worked for others—it’s amazing how much one can learn from here : )
October 11, 2010 at 1:48 pmno i havent tried cytoxin–the only thing i have tried is ivig and am now coming off the prednisone ( which i dont think did anything), i did ivig for 1 year every 12 weeks–i did feel better after–especially after the first couple– i think 12 weeks apart was just too long–after a whole year we retested and my antibody level stayed the same. starting this week i am going to start having ivig every 6 weeks. I really hope this will work, my dr did mention pe also-i think she means after my 6 sessions of ivig every 6 weeks if that doesnt work–i’ll clarify when seeing her thurs. Thank you for your post though—guess i was having a prednisone moment– lol. did you have to go through all these things that im going through to get to the “big guns” like cytoxin?? because i would much rather skip all these hoops and go straight for the chemo. cytoxin etc if thats what it takes– i would rather be sick for while and then cured rather than waste so much time trying things that dont work. i can see the drs point–less invasive etc..but when your life is on hold trying all these things that dont work—cancer pts survive 9 or more mos of chemo-then life goes on….thats all we want for our disease too.
October 11, 2010 at 1:34 pmcoming off the prednisone hasnt been too bad so far–i actually feel better coming off it then when i was on the higher dose–i was on 50 mg for 8 weeks,20 mg right now–ive read that coming down from 20 is the hardest part–will most likely start this thurs after seeing dr. just eating lots of bananas to keep up with the loss of potassium from prednisone–and hoping my immune system doesnt attack all the potassium before it gets where it needs to go–lol. Your prednisone experience does sound a lot like mine was, when i was on 50–hasnt been bad since below–i wonder if 50 was just too much for me, I weigh 137 and being female from what ive read thats a pretty hefty dose??? Im kinda liking the 20–things that would normally stess me–aren’t. starting to get back the leg strength i lost on the high dose–i guess it can take up to 3 months 🙁 bad stuff i cant believe i requested to try it–guess i was just desperate to cure this crap. I have to be kind of pushy with my dr–shes very conservative and i just want to get this fixed–the waiting to see if new things are going to work is the worst—i dont know about you–but i start ?ing every buzz and tingle–is it more degnerating nerves or is it a sign of regenerating? Lori
October 11, 2010 at 9:31 amIncreasing IVIG to every 6 weeks for 6 sessions–loading dose 2gm per lb. then pe if this doesnt work. dr hasnt mentioned any other medications yet for once im off prednisone. Im seeing her this week Thurs–when i go to MA to get my ivig, so i’ll know more then. I get the 5 day dose in two days–miss less work this way. The chemo doesn’t sound fun at all but it is aggressive–hopefully it will work. Are there a lot of side effects and risks with it? I’ve read a lot about the medications out there that sort of work like the chemo–i figured the dr would be talking of them soon since the prednisone didint help. Have you tried any of them ? Chemo must be about as aggressive of treatments there is available for this other than stem cell??? good luck –:)
October 10, 2010 at 10:00 pmguess that makes two x’s for the prednisone–im coming off it too–down from 50 to 20 right now. made me lose wt., irritible, weakness. Are you going to continue with the ivig and the cancer drugs at the same time? Have you already tried PE ? my neuro said pe would be the nextstep after ivig. I previously had only been getting ivig every 12 weeks we are increasing it to every 6 weeks starting this coming week—i hope that does the trick–I am so ready to get my life back!!! Keep me posted on the new medication-after 6 sessions of ivig every 6 weeks i may be right there with you–i have told my dr to PLEASE step up the treatment—get aggressive do whatever it takes to make this go away—waiting and wondering for these things to work is the worst! Best of luck with your new treatment plan i hope it works—every success story here is hope for all 🙂
