August 25, 2010 at 10:58 pm
glad you “broke the Ice” nice to hear from you : ) my diagnosis also came from the mayo clinic–even though my neuro is in Mass and that is where i go for my ivig. It wasn’t until my current Dr. decided to send my bloodwork out to mayo that they were able to get a diagnosis as to what was causing the cidp. glad to hear the steroids worked for you, How did you feel while taking them?? I ? every day whether or not they’re working..and if they’re suppose to improve strength–then why do i feel weaker while taking them?? LoriAugust 24, 2010 at 9:57 pm
lilly–i know this is a super old post im replying to–but i have been recently started on high dose prednisone for cidp ( you remember the sleepless nights lol–so here i am reading old posts) im 18 days into the prednisone and feeling weaker, even though i have periods where i feel energized and am getting so much done–at the same time i feel weaker and feel that walking is coming harder–just wondering if you experienced any of this during your recovery with the pred. I keep second guessing myself to whether or nor its working and have been searching through posts of others who have tried it to see how it made them feel. If youre still on the board and get this message please drop me a note…LoriAugust 24, 2010 at 9:37 pm
Dieno—Great advice—loved the post:) 🙂 LoriAugust 24, 2010 at 9:31 pm
mine came on very gradual, started as leg cramps at night–that i blamed on running or too much exercise at the gym. then i started with tingling then numbness and eventually weakness. would mention the tingling etc at my check ups but it wasnt until the numbness and weakness began that i was referred to neuro. NO idea why????–its auto-immune–my body is making antibodies to potassium…have always been healthy, had 3 normal pregnancies,always exercised, not exposed to anything toxic that im aware of..i guess like a lot of us with auto immune issues we may never find out what exactly caused the body to turn on itself. LoriAugust 24, 2010 at 9:23 pm
[QUOTE=dsellars02]I finished IVIG last week and I had the hardest time with it.. I went out and had a few glasses of wine and got really sick… The nurse told me I could.. Does anyone else have problems with it?[/QUOTE]
My first ivig treatment gave me3 a horrible headache. The second time around I made sure to drink tons of extra water–plus i cut down on ther benedryl amount and had a much easier time with it. LoriAugust 22, 2010 at 6:37 pm
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. LoriAugust 18, 2010 at 9:15 pm
I tried the melatonin only a few times and was wide awake 2 hours after taking it for the ENTIRE night—seemed to have a stimulating effect. I’ve also read that melatonin only works for people who arent’t producing it properly at night–possibly if were not falling asleep with it –our bodies arent lacking it??? LoriAugust 17, 2010 at 9:57 pm
[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
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. LoriAugust 17, 2010 at 9:43 pm
thanks michelle–glad to hear the prednisone worked for you–i was hoping for some success stories:) the main side effect i’m feeling is the aggression–notice it while driving, working etc..–feel like i’ve drank about 30 cups of caffeine!–and im only on day 12 of the prednisone. If it works then the outcome will be worth it—I so want to get the strength back in my feet, ankles and calves—but if it doesnt work-what a lot to go through for nothing. how come you had to stay in the hospital while they were treating you? what were some of the symptoms you were feeling that made you know things were getting better with the prednisone and ivig?August 15, 2010 at 9:42 pm
very emotional post—I didnt realize that cidp could get that bad–i learn so much more on here than the doctors tell me. very sorry to hear of your condition, if you’re up to typing i would be interested in your different treatment experiences, what to expect etc..i’m currently on the first plans of treatment ivig and now ivig with prednisone.August 15, 2010 at 9:26 pm
loved all the inspirational helpful replies—thank you!!! yes, i have read that low dose or even “pulse” steroids are good options if they work for you. I just need to stick with this high dose for 3 months to see if they’re going to work and hopefully regain strength in my feet, ankles and calves. If successful then I can work on a maintanenece regimen.
Loved the post of what works one day–may not the next, one time may not the next etc… How true that is–even day to day i question myself on the prednisone–is it working or not–my biggest fear is i dont want to make things worse by taking it–then again i dont want to stop too early and never know if it would have helped. CIDP is a strange disease, when nerves degenerate they tingle and buzz and when they REgenerate they tingle and buzz–so how is one to know when the tingling is good or not good???August 12, 2010 at 10:17 pm
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.June 20, 2010 at 10:03 pm
thank you all of your responses have been very helpful. Ive come to the conclusion after reading them all that no matter what the diagnosis or how we got here having the cidp really sucks!!! Its hard not to overdo it when used to being active. Im sure you all hear me.
I have decided to have my thymus gland removed–if i dont i will go through the rest of my life—(Im 46 by the way, dont think i mentioned that in my original post) wondering if it is the thymus gland making the potassium antibodies causng the cidp. So I may go through the procedure for nothing but if it could help this condition then it would be great. Ive read many articles where it has helped with mg–but my condition is supposedly rare–so far i cant find anything linked between it and the thymus. Once again thank you all for your replies. Lori