hi roland–i started the prednisone on august 6th–so its been a little over 2 weeks for me. I too have questioned that i feel weaker ??? then i did read someplace that it can feel like that in the beginning–it didnt say how long for though. Then i “ll have a day where i feel like im feeling stronger?? I keep trying the tippy toe test—currently cant not raise up on my toes or heels due to neuropathy and weakness so i try it every day–so far still cannot–BUT i think i feel stronger in the rest of my body which i didnt think was affected. definitely less fatigue overall. My dr also said to give it time–she said 3 months–i read the average result time was 1.9 months– i google a lot LOL–so not sure what site–reputable ones–that arent trying to sell stuff. Have you noticed a lot more tingling sensations since starting on the steroids? what parts of yous body is affected by the cidp? i also read that the feet are often the last to heal–makes sense since theyre the extremity furthest from our vital organs–so maybe the prednisone strenghthens other places before reaching there–maybe they were places that werent bad enough so we didnt notice strength loss?? I am by no means a Dr.–just speculating–trying to make sense of this disease in layman terms. Nice to have someone else going through the same thing–so i know im not the only one with the same ?s.. wasnt glad to hear of your weakness feeling but maybe since were both feeling it –its normal on the start of prednisone?? I’m pretty sure right now that i want to give the prednisone the full 3 months just so i can be sure it is or isnt going to work—peace of mind–if i stop too soon i’ll always wonder if i could have regained strength with it if i waited it out—patience:) 🙂 nice to hear from you–keep me posted. Lori

[QUOTE=reed350]i was diagnosed with GBS on may 28 and went thru a 5 day treatment if IVIG. and felt alot better . how ever 3 week after i got the dreaded pins and needles feeling again and lost most of my strenght again. and now the docs tell my thats its CIPD. and have now gone thru another 5 day treatment of IGIV again ending july11. im feeling better except still somewhat weak and numbness in my toes. its now August 8. i was in to see my neuro last tuesday went thru another nerve conduction test. they are now starting me on a two week regime of ivig starting on august 16. i didnt make it to the 16th on monday the 9th i went back to my favorite er to see the oncall neuro and got readmitted to the hospital. got 3 60g doses of ivig. its now friday the 13th im back home and will be starting my 2 week maintenance schedule if ivig starting this coming monday. and i too am on 50mg daily of prendezone. im hoping this works. this up and down is very frustrating. any info on ivig and steriods together would be great.

Ive been reading alot of the posts here since mid june and its been helpful for sure in answering alot of my questions. there is a great bunch of people here. and i hope in time i’ll be of some help to others on this road of CIPD hell.
take care all for now

roland[/QUOTE]
sounds like you are on the same exact treatmant plan that i am right now–i am doing a 5 day ivig (just doing it in 2 days cuz of work and travel to get it) along with the 50 mg of prednisone. my cidp damage is in my feet, ankles and partial calves. i have both sensory issues and muscle weakness. my cidp is from a paraneoplastic disorder (potassium antibodies) am upping ivig to every 10 weeks. keep me posted on how its working for you– i have read many good articles on the prednisone increasing strength–so am hopeful, havent read about it doing a lot for sensory stuff. Lori

no i was diagnosed with voltage gated potassium antibodies–(auto-immune)i had been doing just the ivig for 1 year 2 gm per lb–(loading dose) every 3 months. the cidp did not worsen but has not significantly improved at all, the antibody % went from 14% to 17% after a year of ivig–thats not really a big difference so basically stayed the same. it was at my suggestion that she began the steroids–i thought they might speed the healing process. the ivig alone seems to be taking forever!!! i feel like im missing out on my life, really want to be able to run again, to ski, to travel and be able to comfortably walk and hike places while traveling. with the steroids we are also stepping up the ivig to every 10 weeks for the rest of this year. its hard with a full time job and 3 kids but i really am hoping to beat this thing and get back on with life!! i read so many inspiring stories on here–they’re great–love hearing what has worked and hasn’t worked for others–its one way we can help each other. when doctors hear that it has worked for others with similar symptoms i think they are more apt to try things. i read from a few different people that the pred/ivig waw successful together.